Mom's First Hold & Dad's First Hold

We made it! We made one week and he did better than anyone expected him to. In order for him to progress, Kaio was often asked to do hard and new things. He was extubated for the first time at only one week to give him the opportunity to work and grow and get stronger.

Because he was extubated and doing (too) well, I was able to hold Kaio at only one week.

That is another special kind of pain, anxiety, stress, loneliness. To have to wait to hold your baby; whether it is hours, days, weeks, months... too many moms know that pain. It was so painful to sit on the outside of the isolette, one thick wall of plastic away from my baby, and not be able to touch him. We were still supposed to be together. I was supposed to be the environment that allowed him to grow and thrive. But now he was alone. Left to do it by himself. Asked to do more than any baby should have to and seemingly without any support or comfort.

Luckily, we had a fabulous nurse these few days who very much insisted to me and the team that I should get to hold him. I was afraid to even ask... I figured they would let me know when it was possible... when it was safe. I was amazed he even had the opportunity to so quickly.

So. I held Kaio when he was barely over a pound. He was so tiny. The process to get him out of his bed and into my arms was an incredible dance. They cranked up the heat in the room, they got out warm blankets. I pumped so I could hold him for as long as possible. Two or three nurses and the respiratory therapist came in to help with transfer from his isolette to my chair less than a foot away. One picked up Kaio, one picked up cords, one moved the breathing equipment, others running around getting clips and blankets and setting up displays, silencing alarms. It was extremely overwhelming. Amid the mayhem, all of a sudden, a little nugget of a human ended up on my chest and tucked into my shirt. His whole body fit on my chest, head to rump, above my bra line. His little head barely bigger than an egg.

He was so warm. He was so tiny and precious. He smelled amazing. If you know the newborn baby smell, you know it is heavenly. He smelled like that but 100x concentrated. Like buttery, syrupy, new baby smell. They piled on the blankets and turned off the lights and let us cuddle. I closed my eyes and breathed with him.

Holding (or kangaroo care) has been proven to improve preemies overall well-being. We saw Kaio improve and relax and require a little less support while he was with me. He even gave me a couple of sweet tiny squeaks since he didn't have a tube down his throat. He softly stroked my skin with his tiny hands.

Many told us being in the NICU is like a rollercoaster - a lot of ups and downs. This was an amazing high, and then we had a steep plummet to a low. (...I never liked this analogy because it is in no way FUN LIKE A ROLLERCOASTER. Maybe if the rollercoaster was made of rickety old wood, rusty nails, and you are strapped in by snakes, it could be likened to the journey.)

Kaio got an infection the next day and was intubated again and fought off several challenges over the next few weeks. Because of this, Daddy didn't get to have his first hold until about a month in.

Look how tiny he still was! That little hand. His tiny little nose! His skin looks so good and plump.

My husband found the whole ordeal extremely stressful (although wonderful) and let mommy take the next few holds after that until Kaio was easier to move and less delicate. It was definitely special when we reached the point where we could pick him up all on our own with minimal help to move his cords (about 3 months in). It was an incredibly strange feeling to pick him up cord-free for the first time at about 5 months. Strange, but amazing.

We are so happy to have him with us. Now crawling and scooting around with not a worry in the world - except maybe worried about his sister who is constantly trying to squish him to death with her love. And recently, he has started to come over expressly for cuddles (before he would only come over if I had something he wanted, e.g., food) and it makes my heart want to burst with love and gratitude for this sweet little person.

I will hold him on my chest, on my lap, and in my heart forever.

Counting Hours

On Friday, Kaio was born at exactly 24 weeks, 11 inches, and 435g (about 15 oz). (***I've been told many hospitals won't even attempt resuscitation under 500g***)

That was 1.5 oz more than we were expecting and we were lucky the ultrasound from the day before was underestimating his weight rather than over! He was incredibly tiny for his gestational age. Although he was barely large enough to be intubated, we were lucky he was a full 24 weeks rather than 22 or 23 weeks. He also had a full five days to get the full effect of the steroid injection from me before he was born. That was also huge.

They used surfactant to keep his lungs open while on the ventilator. They gave him medications for pain and anxiety, as well as caffeine, nutrition, scant breastmilk and many other things I simply don't remember anymore.

They told us, make it through the first 7 hours. And he did okay. He wasn't rejecting the ventilator. He didn't show any signs of major distress. He was alive still. And I barely had a grip on what was even happening.

They told us, make it through the first 24 hours. And it was hard to not be by his side for every minute of that. I remember he had his hand resting on his neck, fingertips barely touching his skin. They sat like that for about an hour and he ended up breaking the skin where it touched (which can be dangerous because it is another opportunity for infection).

Everything was so delicate like that. His skin, his brain, his lungs, his eyes, his bowels. A diaper change was a major affair. Lifting up his bum at all could cause brain bleeds so it was done so delicately. Sometimes, certain portions of the cares (like the diaper change) were skipped altogether to decrease the exposure to stress.

I pumped a full 2 oz of colostrum the first night and the doctor said it was enough to "start a lemonade stand [for the micros]" and his nurse and I said "ew". 😂 He said that because Kaio had his cares and feedings every three hours and his first tube feed was within the first day and was a mere 0.1 ml. So, over the course of his first days, Kaio would get only 0.8 ml per 24hrs. I remember the nurse lightheartedly giggling about how tiny the amount was. Even though these nurses see tiny babies like this often, I can imagine it would be hard to get used to seeing these minuscule doses, and toes, and everything. I laughed along with her.

My husband and I prayed for comfort and for what was right for Kaio. My mother will often recall feeling like she did not know what to pray for. Was it right to ask this baby to go through so much pain? I laid in bed, barely able to sleep because I was wracked with stress, worry, and guilt. I often insisted we make late night visits to see him because I could barely breathe when we were away. He was a piece of me, left all alone and I could barely stand it. I cried to my husband and asked him what we could even do for him. Not much. So we left it in the Lord's hands and were simply there for him. We advocated for what we thought was in his best interest, I pumped to give his tummy the best chance at development, and we worried and visited and just tried to make it through. I took pictures and videos. I tried to not be afraid to love him, in case I lost him.

He made it through the first 7 days and things were going well enough for him to be extubated (HUGE for such a tiny guy!) and I held him only one week in. ...My first hold my need to be it's own little blurb. It was a lot. Holding him was not a simple task.

Anyway, he ended up with an infection by the next day and was intubated again and really fighting for his life for the next few weeks. We were amazingly lucky to have made it far enough and grow enough that he was able to handle his infection. It was weeks of adapting his care plan, trying new things, new medications, midnight calls to come say goodbye, and several events a day (where he refused the ventilator and had to be manually pumped with oxygen - "bagged").

But....slowly, we watched him grow. His skin developed and thickened. He opened his eyes. He showed his strong little spirit. We began to feel the days, instead of the hours.

I posted many things in his bay and one of my favorites was the quote:

"Preemies are like bumblebees: Aerodynamically, the bumble should not be able to fly, but the bumblebee doesn't know it so it goes on flying anyway."

So. He just kept flying.

Pumping for a Micropreemie

Yeesh. This one could turn into a novel. (watch out)

I had so many amazing experiences pumping for my son while he was in the NICU. I am truly grateful that he had that nourishment, greater odds, and support from me. I am so lucky to have been able to pump and provide so much from him.

BUT HOLY CRAP DID IT SUCK PRETTY MUCH ALWAYS. (it is a pun. but I also mean it. in all the ways.)

I became a pro-pumper pretty quick after Kaio came. I had pumped after going back to work when Stella was about 7 months. That lasted about 5 months; my supply dwindled and Stella decided she was done. So pumping 2-3 times a day, when it wasn't life or death... was barely experience. It was nice to know I had done it before to some extent, but I was not ready for the micropreemie pumping experience.

I was lucky enough to get colostrum right away. By the end of his birthday, he had enough milk to feed him for about 3 weeks. It was only 2 ounces (60ml) but he started feeds at 0.1 ml. (so crazy. so tiny)

I pumped every 2-3 hours, for 4 months. I fell asleep pumping in the night, only to wake up because the bottles had filled and were overflowing (who knows how long I had pumped??). I pumped while working on my laptop, virtually everywhere. I pumped in the car while driving between work and the NICU and anywhere else. I pumped at crowded swimming pools with clogged ducts and just barely held it together. I pumped in special pumping rooms at the NICU, dropped the very full bottles out of tiredness on my lap, and then laid on the floor and cried over my spilt milk. Everything in my day and night revolved around pumping. I planned when I could even hold Kaio based on when I had pumped, because holding was such a long and complicated process for a long time.

There were so many interesting things that came from me pumping. First was the app I used (pumplog I think). I was obsessed with not letting my supply dwindle like it had with Stella, so I tracked every pump session like a maniac. It was amazing to see time/production trends; how quickly my body would react to making more milk in less time and the like. I pumped at least 40 gallons in the 4 months my son was in the NICU. We had to buy an extra freezer for just milk, and we still ran out of room. Kaio was never able to figure out breastfeeding and came home on bottles and an ng tube. After about a week of pumping at home with Kaio there and all of his needs, I gave up. I did not have the mental faculties to keep it up anymore. We also had enough milk stored to feed him for another 5 months, so that really pushed me over the edge in quitting. I loved using that app. It was kind of like my trophy each day and overall. I could (and would 😬) compete against myself to get more milk until I felt like I reached a rate that would double a newborn's needs. It sounds crazy. I WAS CRAZY. Partially because of this next bit...

Second interesting thing was Kaio's study. He qualified to be put on a study at the NICU where they analyzed the mother's breastmilk and fortified directly based on what the nutritional value of the mother's milk was and what the baby needed. Since breastmilk can vary greatly between each woman and from day to day for each woman, this was incredibly interesting (especially to me as a food scientist, I loved talking to the doctors and nurses about it... they even let me see the super secret expensive equipment they used to analyze the milk). If I remember right, the average human breastmilk is about 22 calories per ounce. At one point, my breastmilk came in at 36 calories. 🎉
It was amazing to know that Kaio was getting exactly everything he needed, between medications, milk, and love from everyone around him.

My third and final favorite thing about all of this crazy pumping was being able to be there for other moms. I talked to the lactation consultant often, not so much for advice, but because she was friendly and we talked about everything it took to pump with a baby in the NICU. Eventually, she would come and ask me specific NICU pumping mom questions in order to help other women. Occasionally, if they were up for it, I would meet up with moms that just began their journey in the NICU, and give them every ounce of encouragement I could. As well as a few tricks I learned with using the hospital grade pumps, how to store milk for the hospital so none got wasted, and all my crazy ways I tried to improve the comfort of the whole task. It really wasn't much, but the idea of being able to help someone at all in the same situation was the only thing that made me feel better.

I constantly think about ways I can give back to the NICU for current families there and I often draw a blank. For me, very little was comforting. I was very grateful for the gracious and kind acts of friends, family, and strangers while we were there, but it often felt empty. I have no legitimate recommendations for how one would comfort another going through something like this. Maybe a hug and a good cry with them (even a stranger... for real). But maybe that's just me. Heck, that's about all I need on any given day, regardless of my emotional state... soooooooo.


I wish I was a better storyteller. That could remember all the details. There was so much more that encompassed it all. I doubt I'll ever be able to piece it all back together. In my head, everything is just a big chunk of gloomy sadness with some bright moments in between. With it being over, it should be over. Move on, get over it. But nope. The whole experience still weighs heavy on my soul, and we even had an incredibly positive outcome of the whole thing.

Some day I'll figure it out. But it is not this day. (Lotr, anyone? 😜)

My Hospital Stay

The remainder of my hospital stay is pretty fuzzy in my mind. I do remember what I did for the time but it does feel distorted from reality when I recall it now. Whether that is from drugs, exhaustion, pain, stress, or suppression of the whole thing, it's hard to say.

I do remember something specifically important which is why I'll give this portion a shot.

I was in the hospital for just under 3 days after my c-section. The entire time was spent in a 3 hr loop, more or less.

1st hour - pump
2nd hour - visit baby
3rd hour - eat or rest or paperwork or visitors

The visit baby hour would bleed into the rest hour if I had the energy to stay in the NICU. At that time, I couldn't touch Kaio and I could barely even see him in his little rainforest. The incubator humidity settings were high, so his isolette was very foggy and the lights were off often to reduce stimuli.

So, I'd sit. Look at him.

The nurses capable of caring for such a tiny person like Kaio were also very good at caring for moms/families of the very tiny people. I don't remember many conversations from the first bit, but they were done with kindness. They didn't talk if I didn't feel like talking. They did what they could to make me feel comfortable in my son's new home. They helped ease the inevitable mom guilt of not being able to carry a baby to term.

At one point I remember I was banned from visiting the NICU for a day because of my blood pressure and recovery needs. That was a long day. I pumped and sat in the quiet empty room feeling everything. Noting how horribly different the recovery of my first (36 week vaginal delivery) compared to this cold, empty, and lonely recovery of this 24 week baby. My postnatal nurse that day made me feel like I was a nuisance. (I don't really remember why... she might have been busy being the charge nurse also, and "since I didn't have a baby" shouldn't have needed care time...?)

In that hospital bed, alone in that room, I felt the companionship and literal presence of family putting comforting hands on my shoulders.

I can't hear this scripture without thinking of those moments. They kept all of me from completely falling apart.



When my time was up in the hospital, I very reluctantly packed and left. Many stories and circumstances know the pain of leaving the hospital without your baby. There are no words for it. It is like dropping a piece of your soul on the ground, and having to casually leave it there. It is undeniably horrible.


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HELLP

Thursday night I had a blessing from my bishop to "know when to ask for help"

My brothers joke that that was a bad choice of words.

I spent much of that night talking to my wonderful nurse. She had twin grandbabies about to graduate the NICU. She had been there for their long journey and was able to fill my soul with the balm of empathy. She had such love and compassion to take time from her many duties to calm a troubled heart. I went to sleep with as much peace as possible.

24 weeks. Friday.

5am: I woke up from a stomach ache. Not something I would usually consider too troubling (had I been at home, I would have rolled over and forced myself to ignore it and go back to sleep), but I felt like I needed to alert the nurse. She took some labs and upped some dosages and gave me pain relief. By 7, it progressed to intolerable. I couldn't sit still, I felt like crawling out my skin to escape the pain. I text my husband to come immediately because I felt SO terrible. My medications were increased again and labs taken again. I'm not sure of the time but I believe around 8:30-9:00, I had relief. For about five minutes, I felt okay. Fine. I even text my husband back essentially saying "False alarm.. I'm fine, but stop by to pick something up for me please 😘"

I was not fine. My body was deteriorating faster than any drugs could keep up and the relief quickly melted away. I did not have enough left in me to send any further text updates, but luckily my husband did come ... and found me in an awful state.

So much of this remaining day is hazy or bits of memories filled in by others. At this point, I was truly starting to die. I developed HELLP syndrome quickly and my organs were shutting down. Months later, I was able to recall that at one point I started trying to vomit (but had an empty stomach), and lost all control of bodily fluids. I remember the OB and perinatologist coming in, letting me know I was headed to get a c-section. I think I only nodded, but remember thinking OF COURSE I AM, I'M DYING. (My inner self is rather yell-y. Actually, my outer self is too....)

They rolled me to the OR, and I had past the point of rejecting the pain, and I could feel my body giving up. I was laying on the hospital bed with my eyes closed and a nurse said "oh good, she is sleeping". YEAH, NO, I'M DYING.

I never saw the inside of the OR. I didn't have the proper consciousness to really open my eyes, or do anything of my own will. They did a spinal and laid me down. It went through my legs and stopped. They tried to start the c-section but I could still feel the cutting. While they got ready to do the general anesthesia, my bishop came in (he is an anesthesiologist and my sweet husband called him. He came in when he wasn't working literally just to hold my hand during the operation. Another tender mercy 😭).

(Fun side story: I love my ob. She is very sweet and tender and took care of us so much through this whole thing. She said when she first cut into my uterus, Kaio's little hand popped right up to say hi! She said she had never seen that before and it was so incredibly cute 💜)

While I was under, my poor husband was out of the loop. They dressed him all up to be able to come in during the c-section after the spinal was in. Since I had to be under general, he wasn't allowed in. To make matters worse, since it was an urgent situation, nobody had the time or thought to tell him what had happened. He sat outside for a time, suited up to go in, worried that we were both dead, and had no idea why he wasn't going in yet. When they realized he had been left, the NICU team brought my husband into the pass-through resuscitation room where baby Kaio would be cared for immediately after the birth. Dr. Cheatham had about 10 minutes to prepare him for what was going to happen: he explained gently that baby might not make it, and that he could probably touch him and take pictures (because it may be his only chance to spend time with him while he is alive). Baby Kaio was successfully intubated and taken to the NICU. My husband had to hear, see, and do all of that all alone while worried about my health. That is such a burden I cannot even imagine.

I woke up. Feeling awesome. No. Seriously. Despite the anti-seizure medication (and whatever else) they had going in my system, I felt close to a million times better. Those dumb placentas.

I asked my husband to text my boss to tell him what had happened (I had been working while on bedrest at the hospital). Then he told me how my friend from work came to visit just after I was wheeled away for surgery. Her response? "Well, shit." 😂No one could have summed it up better, friend. That was such a lighthearted spot of that day. Still makes me laugh.

They asked me if I wanted to see my son, but first they wanted to make sure I was comfortable. So, they shot me up with a bunch of pain meds and off we went to see Kaio.

... I don't remember it. I don't remember the first time I saw my son. The next thing I remember from that day was later that night, the second time I pumped, I got two ounces of colostrum (wow!😱).


Hellpy Birthday, Kaio. 🙈



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Hospital Monitoring / Predelivery

Monday I was admitted to the hospital for preeclampia at 23 weeks.

They drugged me up and hooked me up to monitors and said "Stay pregnant" 😐

I met with lots of people. The neonatologist came down to have some real words with me. He wasn't there to comfort me but I did feel comforted by his honesty. He said many things regarding whether or not my son had a real chance of living but after all of it, he said "If you want to try, we will try [everything in our power to keep your baby alive]"

Shortly after, a NICU nurse came and gave my husband and I a tour of the NICU.

THAT. For me it was that kind gesture that really got to me. We can talk life and death and statistic and numbers all day but actually seeing the inside of the NICU. It finally hit me. They aren't talking if. They are talking when. They are saying stay pregnant because they believe I will; they are hoping against the odds and experience that I will. They are showing me the NICU now, because it is inevitable. I cried when the extremely kind nurse finished the tour. I told her thank you, but I never wanted to see the inside of a NICU. No parent does.

Thursday was bad. It was a bad day. I still consider it the actual worst day of the whole pregnancy and NICU stay. I had all the big checkup appointments with all the specialists and repeat visits from neonatology, etc, etc. My dad stopped by to hopefully intersect with a few other doctors to get the real (not emotionally pregnant) 411. And, of course, be my great supportive dad. My mom came to visit in time for the ultrasound; it was good news / bad news. Baby stopped growing and was a mere 390g (baby should have been closer to 800g). BUT, there was no indication of stress on the baby besides that. As long as there was still positive cord flow, he was set to keep cooking.

Then. The perinatologist comes in. With her big fake eyelashes, sits down on my bed and looks at me like a lamb headed to slaughter. She said the baby was too small to survive, I might as well go home and have a miscarriage, everybody has a pet story about a preemie that survives but it's not gonna happen, yadda yadda yadda. SHE WAS THE WORST.

(MEANWHILE: my mom is freaked and texts my husband, who is in school, because she knows I need REAL emotional support. She says "Come to the hospital now. Sorry" Aaaaaand he thought I was dead. 😅)

Then there was the constant barrage of "stay pregnant til 26 weeks, I'll be back from vacation by then" "Stay pregnant til 27 weeks, I'll be on call every day that week" Those ones hurt. By then, I knew in my heart I would never make it that long.

On a happy note, Thursday night we had a visit from our Bishop and his wife. To be honest, I couldn't tell you nearly anything about that visit except that it was extremely comforting. My bishop and husband gave me a blessing. I remember it said "I bless you to know when to ask for help."

And I did.


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Getting Severe Preeclampsia

So. Here is where it all began. Pregnant with Kaio. It is amazing to recall that at the beginning of this pregnancy I was looking into having a home birth. I had a very successful experience with certified nurse midwives in a birth center with Stella and, since preeclampsia can be a just a first-time pregnancy thing, I was hoping we would have an uncomplicated pregnancy. 😏

WRONG-O.

At around 18 weeks, I drove about 8 hours to go to an educational seminar for work. On that trip, I saw stars for the first time. It FREAKED. ME. OUT. When I had visual disturbances with pre-e before, it was just like these stars. I wasn't doing anything out of the ordinary, I wasn't dizzy or light-headed. They came and went. Poof. And I was too scared to tell anyone about it. 18 weeks? It's a fluke. You can't even get preeclampsia that early (*very rarely you can, but preeclampsia is a 20week+ complication*).

Fast forward a few weeks, it happens again at work. Officially freaked, I called my husband crying.

"I'm afraid I'm going to have this baby at 25 weeks."

 I so distinctly remember saying those words. I said them. And then was hit with a huge wave of .....reality? ...confirmation? ...foreboding?  Comfort was definitely not the feeling.

We bought a home use blood pressure cuff so we could feel more in control. I felt nervous about a few readings before a business trip and visited my doctor's office. Only seen by a nurse, I had my blood pressure taken (I believe inaccurately), and they told me to come back after my trip.

I FELT HORRIBLE ON MY TRIP. Some of the days were classes. I was too late getting in a course, and luckily was able to stay in my hotel and do a course and rest while the others did theirs. My readings were normal. One of the days was a lot of walking (to talks, classes, expo floors) and my co-workers demanded I call my doctor because I didn't look okay. ...I didn't feel okay. All the while, my home cuff told me things were A-OK! 🙈

MONDAY: (23 weeks) First thing, my mom and I went to the doctor's. It was the 3rd of July and the waiting room was packed. We were not leaving until I could be seen. My blood pressure was through the roof. My urine dip stick was just as bad. My doctor came in and told me the survival rates for 24 weekers and sent me to the hospital. Aaaaand that was that. Severe preeclampsia.

I went to the hospital to get shot up with a bunch of drugs (medicine for blood pressure, seizures, and some steroids to develop baby's lungs) and wait.

"Just stay pregnant as long as you can."

Cool. Cuz I that's something I totally have control over. 😐


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Pain and Joy

I never wrote about my experience with severe preeclampsia and delivering my son at 24weeks, and everything that followed. Not here. Not in a personal journal. I never felt that I could put those enormous feelings into words.

To be honest, I'm still not sure if I can. I think the best I can do is tell a few stories as they bubble up to the surface. I have to figure a way to get these feelings out before the new baby comes --- I'm 22 weeks pregnant and the idea of being hit by the freight train of feelings and emotions again is ... crazy. unimaginable. I've had some episodes of PTSD because of these experiences and I hope writing it down will prevent further traumatic stress with this pregnancy/delivery.  (Nothing bad has come up yet, but still can. It only took a week to go so quickly downhill before.)

But, how can I? It's so much. It's so heavy. There is so much.

Let me see if I can figure a way to break it up.

Getting severe preeclampsia
Hospital monitoring/predelivery
HELLP
My hospital stay
Counting hours
Back to work
Mom's First Hold/Dad's First Hold
Getting bagged, midnight calls, & the ER
Pumping
Making friends
Broken memories
Being 4 people
Kangaroo Care
Videos for Stella
Making a home
Breastfeeding
The prison sentence
Late term nicu care
Home with tubes
Normal life...?
PTSD
Milestones


I'm going to have to do bit by bit. 👀

All I know is that these stories have so much pain. But also so much joy. There are countless times where angels from heaven and earth ministered to us. There are so many people that feel so much more than friends after watching our son grow together. We have seen many miracles. For our family, and for other families.

I know that if we do have another early baby, we can do it. We made it through. Kaio is doing wonderfully. Soon it will be hard to tell he was half-baked. And the pain fades as he continues to progress. More joy. Endless joy, as he grows and develops.