Change of Plans

I have dedicated myself to this blog and my readers. Never holding anything back. But I have to tell you out of all the doozies I've written... This will probably be the hardest. 

I'm sorry for not posting lately but don't think I haven't been writing. I've been slowly documenting my journey trying to get pregnant while battling my ferocious interstitial cystitis and endometriosis. 

What a journey it's been. It's been 4 months of taking different combinations of estrogen and progesterone trying to get my period to start that I've been suppressing medicinally since I was 12. The last real one I had was the cycle I got pregnant with Titus on. 

But as you may or may not know hormones exacerbate IC and Endo like you wouldn't believe. Picture Endo being a garden that's planted and carefully watered, it grows quite well on its own. But then you dump some ripe fertilize all up on there and you're having salad for days! Of course when the Endo is acting up, the IC gets mad and tries to steal the spotlight back. 

Being the stage that they're both trying to hog has been exhausting and more painful that I could describe. 

So there's that going on. Plus I've been getting UTI's (urinary tract infections) literally once a month and I have a general sense of nausea 24/7.

I don't think I've told you that story... Well. I had hyperemesis gravidarum while I was pregnant with my son, Titus. It was constant, unrelenting nausea and vomiting. I literally threw up every day from the day of the positive test to the day he was born. 

It got so bad around 16 weeks pregnant I passed out from dehydration. So they put me on constant IV's, pumps that administered zofran (the go to antinausea med), and eventually gave me a PICC line (which is a central line that goes from a vein in the arm to a vessel near the heart that can stay in for long periods of time) that administered meds and fluids around the clock, all while taking phenergan (another antinausea med) by mouth and sometimes as a suppository when I couldn’t keep it down. And I still threw up daily and was nauseous all the time. 

I lost 20 lbs by the time I was 20 weeks pregnant but miraculously and thanks to the medicine I ended up with a sweet, chubby cheeked 7lb 11oz baby, Titus James.

Unlike most people with HG, my nausea and vomiting didn’t stop after I had him... It continued while I nursed him for 14 months leaving me around 45 lbs less than I was when I got pregnant. (The only advantage to vomiting for 2 years)

When I stopped nursing it reigned in a little bit. I was rarely vomiting but still the nausea lingers to this day. Oh and by the way I've gained 15 lbs of that weight back. Darnit. 

Another fun fact about my broken body... When I take a particular drug for a long time my body eventually rejects it with a very dramatic allergic reaction. (My body is all go big or go home.) 

So. As of a few weeks ago I was down to only one antinausea med that I could take, phenergan, but it doesn't just make me tired. It makes me sleep the sleep of... Well... My husband. (Imagine a bear that took Tylenol pm before he headed for hibernation.) 

So while I was at some random doctor for yet another UTI I asked if she knew of any other antinausea meds and she basically said "by George yes there is, Tigan!" (She was wearing a Scottish sash, it was all very strange.)

After a bunch of rigmarole at the pharmacy about it being a super old school med, having to call around to find it, and having my sister pick it up… I finally had the new medicine and new hope. 

The next day I woke up with my usual pain and nausea so I happily took my trusty dilaudid and this new tigan stuff. 

Next thing I knew my toes were clenching up all on their own. I had a dystonic allergic reaction to compazine (another antinausea drug) when I was 15 so I knew what was happening.

I was on hold to talk to a nurse when my calf muscle froze up too. I hung up the phone and waddled to the car in my cupcake pajamas, my mom loaded Titus up in his dinosaur jammies and we sped to the hospital. 

By the time we got to the ER my whole body was contorting as random muscles tensed up on their own. My head was literally being forced as far right as it could go. It was like some serious exorcist business... So they rushed me to a room and pumped me full of Benadryl, steroids, muscle relaxers and fluids.

Pretty soon my body had relaxed and they sent me on my merry way. I came home, ate a little bit, and then crashed from all the meds. 

An hour later I woke up, still really drowsy but my toes were clenching up again! We once again sped to the local hospital and went through all the same motions. 

Except this time it didn't work... It just kept getting worse and worse. My muscles were locked up so hard I was shaking. Next thing I knew one very important muscle was flexing in the wrong direction. My tongue. It was closing my throat. Then my pulse went soaring up to 180.

They pushed me to the trauma room and I vaguely remember words like “intubate” and “paddles” being tossed around.  

They quickly decided I needed to go to a bigger hospital, more equipped to deal with this crazy reaction and I needed to get there soon. 

The next thing I remember I was laying in the back of an ambulance seeing the flashing lights and faintly hearing my husband’s voice mixed with the sirens. I mumbled a joke to the medic about my husband being thrilled to be riding shotgun, sirens blazing before another attack send me unconscious again. 

Next thing I knew I was in a big, dark room that I later found out was the Cardiac ICU at a hospital in Tacoma. I was having full on seizures at this point except they weren't considered that simply because I was technically conscious. Whatever. They called them episodes (don't get me started on the word episode... an episode is 30 minutes of Friends not flailing about choking on my own tongue).

I don't remember much about that part... I remember a phase when a doctor told my family members to hold me down when the seizures started and I knew they were trying to help but it hurt so much worse. I could barely communicate. I wasn't allowed to have any food, water or even ice for fear of choking during an "episode" They kept the room quiet and dark as to not over stimulate me. A lot of times I'd open my eyes after one, I would see my loved ones crying and I'd try to say that it was okay. I could never figure out where I was, what day it was, where Titus was, who Titus was with. There was a suction tube on my bed for when I choked on my own saliva and tongue. My Mom and husband used it on me several times. They wouldn't give me a catheter because of my high risk of infection yet they were pumping me full of fluids so I almost constantly had a bed pan under me and still wet the bed dozens of times. My husband slept in a chair not fit for a long meeting much less sleep. My very not touchy sister in law rubbed my leg. I told off a few doctors who tried to say I shouldn't have visitors. I was told I was loved a lot. I somehow knew I was going to be okay.

Other than all that I don't remember much... My family has filled me in on more stuff but I think this story is best told from my perspective. (Expect I’d be remiss to not tell you I was apparently seeing mice playing cards regularly and a parrot on my dear cousin’s shoulder.)

One thing I remember clearly is being thrilled when I was rolled to a bright room with a lovely view in the critical care unit 2 days later. My vitals and blood work had leveled out and though I was still having episodes, they were shorter and further apart. 

View from my room in Critical Care

My husband finally got a cot, I could have water and ice, and the nurses were very friendly... It was much better. Still scary but better. 

The next night they considered letting me go home but I hadn't been able to eat solid food and was still having occasional episodes. Since I was doing better my husband went home to sleep, he had to go back to work the next day. I was only a little bit scared to be there by myself and was thankful to have a very sweet, young nurse on duty all night… Who gave me my first sponge bath and somehow made it not as awkward as it should have been.  

I made it through almost all night without an episode and though the next morning I threw up the bite of blueberry pancake I tried, I was able to drink some odwalla juice and eat a few pita chips. So guess what! I was sent home Monday afternoon! Five days after the nightmare had begun.

I was on strict bed rest for a week and not to be alone for the first few days and not alone with Titus for several days. But most of all... I was never, ever allowed to have any form of antinausea medicine again. I was now considered allergic to it all. The only thing I can do for my nausea from now on is a scopolamine nausea patch, I think it’s usually for sea sickness but it does take the edge off.

I was sent home 2 weeks from tomorrow. Yesterday was the first day I was actually able to walk on my own. My muscles were so sore and weak from the constant tension and thrashing that they would just give out. I fell dozens of times, it was so weird! It wasn't like a big dramatic fall, I'd just be standing and then I wasn't anymore. I said to my sister, "It's not falling; it's just sitting when I don't want to." Sometimes it looked like I was doing some weird gangsta walk and other time it was more like a chicken dance… but I’m so thankful to have my mobility back. THAT was annoying.

More than the exhaustion, soreness, and weakness the hardest part of my recovery has been the constant pain in my heart.  A few days after I got home I realized something… how could I possibly be pregnant for 9 months without any medication to ease the nausea and vomiting? It’s true… it might not be as bad as last time. What if it’s worse though, most people with hyperemesis each pregnancy just get worse. Would I be able to sustain a pregnancy? Would I end up miscarrying? Or what if my body gave all its nutrition to the baby and put my life at risk? 

But if I chose to not risk it… that left me with the alternative… Be a family of 3. Make Titus an only child. Never be pregnant again. Never nurse again. Never have the chance of having a daughter. Never hear my kids laughing in their room when they’re suppose to be sleeping. No one for Titus to commiserate with about having a sick mom. Oh the list could go on and on.

My sister is only 13 months older than me and has been my best friend my whole life. I have done everything with her… I wouldn’t be Deni without Jeny. My husband, Zach’s brother is only 15 months younger than him… they are still inseparable. How could I not give Titus that giant, blessed gift of a sibling?

Oh how my heart was breaking. My arms, my heart, my soul… yearned for another baby of my own.

I kept praying for God to give me a clear answer what to do and then peace with whatever that is. I just felt pain. I just felt incompletion. I just felt disappointment.

While lying in bed sobbing, pleading to God I felt a sudden acceptance. My heart hurt so bad, my breasts hurt, my uterus hurt, my whole body hurt as I realized it would never create and nourish another baby but I knew it was the right decision for my body and my family.

I took it really hard at first. I sobbed for 12 hours straight. I mourned the baby I had never had, that God hadn't even knitted in my womb yet. I cried for Titus who would never have a sibling, for the chance of having a daughter, I cried because I wanted to have a daughter with D name like my Grandma, my Mom and I. I cried for not knowing my first pregnancy was my last- somehow I would have soaked it up more, I cried because I would never nurse again. I cried for my husband who had always wanted two kids. I cried for my family. I cried when I realized this has been God’s plan all along. I cried when I thought about how Titus would turn out being an only child. I just cried and cried…

The next morning I woke with EVEN worse pain than usual so in attempt to squelch it I took two dilaudid that morning instead of just one. Minutes after I took them I knew that was a bad idea without any antinausea meds. I threw up from 9:00am to 6:00pm… Each time I would try to eat a mere cracker or sip water it would come right back up. Titus cried every time he saw me sitting in front of the toilet even though I tried to tell him I was just looking for something in the potty. He was inconsolable. He just wanted me but I was miserable and so fragile. The slightest thing would send me back to the bathroom to vomit. I usually love our evenings with just his Daddy, him and me but I was counting down the minutes until 7 so we could put him down and I could just sleep. When 7 hit, Zach carried Titus to his crib but when he put him in there he just SCREAMED, like he was being tortured. As I watched him on the video baby monitor he climbed out of his crib for the first time.

No matter what we would try he would not stay in his crib… If you know Titus, you know he loves to sleep! He gets in his crib and goes right to sleep. No reading, singing, rocking required. We turn on his white noise and lay him down and he is OUT. He hadn’t fallen asleep in our bed since he was 4 months old. But I didn’t know what else to do. So I sang to him and rubbed his back, he laid there with his eyes wide open but real still. Every time I would stop he would sit up and said “gin” (again) and I would keep rubbing and singing. He moved around fighting sleep until he finally fell asleep on top of my feet at the bottom of the bed while Zach and I whispered.

God works in crazy ways some times. He showed me exactly what I needed to see in one miserable day that ended perfectly. I got a glimpse of how it would be if I was sick without antinausea meds and with a sweet, sensitive toddler around. Then he showed me how much Titus needs me and how content we are as a family of three.

So Zach and I have fully accepted that this is God’s plan for us and I even feel at peace with it… the sadness does still linger… I’m sure it always will. There will probably be days that I’m thrilled with the way it turned out and days where I still yearn for another baby. But God had a different plan for our family than we did. He knows far better than we do.

The good news is now I am excited to hunker down and start treating my IC and Endo. I have pretty much put that on hold until I was done having and nursing babies. There is a medication called cyclosporine that is an immunosuppressant that my doctor has wanted me on so I’ll start that process soon. My interstims have been broken for over a year so we’ll get those up and going again. We’ll do the hysterectomy… It will be good. Hopefully between all of that my health will improve and then I can be an even better mommy, wife, daughter, sister, cousin, friend, aunt, niece, granddaughter…

So that is… I’m sorry to leave some of you in suspense… wondering what in the heck has been going on. It’s been the most tremulous, horrendous few weeks… Physically, mentally, and emotionally…  I couldn’t keep telling this over and over so I wanted to just write it out for everyone and also for myself.

For those of you that have struggled to get pregnant or miscarried you know the pain I was/ am feeling… I can’t do it justice. It’s just raw maternal pain. I know we are beyond blessed to have Titus. It’s not that he isn’t enough! He is MORE than enough. We are so very blessed to have him. He is an absolutely perfect boy, he is sweet and sensitive, he loves music and has some sweet dance moves, he gives fierce hugs and open kisses, he adores animals and pretends to be them most of the day, he is smart and contemplative, he is kind and loving, he has a wild temper but hates to disappoint people, he has bright blue eyes and white blonde hair, he is cautious yet adventurous… I could go on for days. He is perfect.

Titus and I have been doing lots of snuggling and watching Pooh lately as I recover. Love him so much!

Also I know a lot of you are thinking this… what about adoption? YES! I hope and pray that there will be a day that I am healthy enough to consider it. My cousins have fostered and are in the process of adopting two precious kiddos and someday we would be honored to do the same.

I’m sorry if you’re underwhelmed by all of this or if you think I’ve been overly dramatic and vague on facebook… I just needed prayer without explanation for a few days... and it helped so much! It’s just been an overwhelming time for me as I recover from the allergic reaction, my usual miseries, my nausea and vomiting without any thing to relieve it, now I have another UTI, I got off the hormones, and the emotions of making this huge, life changing decision to not only stop trying to get pregnant but proceed with the hysterectomy.

Not to sound like a rapper accepting a Grammy but… I’d seriously like to thank my family for all their support and prayers during this unbelievable hard time: my parents, my husband, all of my siblings, my in-laws, my grandparents, my aunts and uncles, my cousins, and some dear friends. Most of all I am thankful for how close I have felt to God the last few weeks… He answered my prayers quickly and thoroughly.

I’ll keep you posted on the new treatments as I try them!

….. Sorry for the excruciating length of this blog!

Love to you all!