Our fight to save Gabriel.

It was brought to my attention a little while back that during our journey I never really outlined our fight to save our baby. I shared bits and pieces, comments here and there, but never really talked about the conversations we had with our doctors. I've been thinking back on it for awhile now, remembering that time and time again we were simply told no. 

When we first got the diagnosis, my first reaction was "what do we do?" The doctor was pleasant but explained that there is no cure, nobody had survived Bilateral Renal Agenesis. I was heartbroken and devastated. I wanted to run out of the clinic and never talk about it again. She insisted we make an appointment to come back and talk about things, that we had the option to induce now or to wait awhile, subtly insisting we induce soon. When we came back to the clinic I had done my google research (haha) and inquired about injecting fluids. Maybe we could get the lungs and other organs to develop and worry about the kidneys after birth. The answer was simple "it won't work." 

I was directed to a doctor for a second opinion. He confirmed the diagnosis, and again I inquired about injecting fluid. He explained that even if the other organs were to develop further (even though we'd likely missed the development time) that there was no equipment to do dialysis on such a tiny being, that we'd have to live on hope of finding a kidney match and essentially made me feel like we'd have to hope someone else's baby would die so that we could receive the baby's kidneys and the process was sketchy at best. 

When we went to the next doctor we were told the same things. It just wouldn't work. I tried to explain that by trying we wouldn't be any worse off than we already were, but that wasn't enough to convince them of an experimental treatment that gave my baby a chance at life. 

I talked to my doctor about the infusions and got told it was too late, even if she could try it. It had been weeks since we first got the diagnosis and knew something was wrong and there was no way the necessary organs would develop in time.  I knew she was right. Approaching 30 weeks we were too far along to hope for enough development in our baby. 

I'm not saying the doctors were mean or didn't want to help me. But doctors are scientific and there's no scientific research or documentation showing a treatment like that would have worked. Beyond that there's risks involved for them too. I understand why they were saying the things they were, in their experience it wouldn't work. 

I gave in, just like so many other parents had to before me. I caved to the understanding that there was nothing they could do. 

After seeing Jaime's baby survive after doing exactly what I was pressing for was both heart wrenching and rewarding. If I had tried a little harder, if I had pushed a little more, could he be here with us?  Could we have saved our baby? 

There's no guarantee. There's nothing saying the dialysis would have kept him alive. I've since learned through Jaime that you aren't waiting for an infant kidney, they can transplant with an adult kidney. Non-the-less there's no guarantee we would have found a match, or that he'd make it through the surgeries. There's no guarantee that something else could have taken his life. 

The boys' first birthday!

January 23rd marked the boys' first year! We did it, we made it an entire year as parents of twins and kept our sanity too.... ok maybe that's to be determined HA!

Obviously their birthday celebration was far different from the 1st birthday we celebrated for Gabriel.  I actually had my babies here to celebrate this one.

Their birthday fell on a Thursday this year, so we did cupcakes at home to celebrate.  Then we had a small party on the Saturday after and invited friends and family to come celebrate with us.

Here's some photos for you to enjoy :)

Birthday Cupcakes: 

Logan

Sawyer

Birthday Party
 

Cake

Logan

Sawyer

First birthday photos 

Sawyer

Logan

Another due date come and gone.

Time is getting by me... So this post is a bit delayed.

January 4th marked the 2 year anniversary of the day Gabriel was due.  Just another reminder of his absence in our lives.  Each anniversary date is a harsh reality that we don't hold our son in our arms anymore, not our first son anyway.

I know these dates will always come and I'll never forget them as time goes on.  I know that each year I will remember him on the anniversary of his due date, even though he wasn't born on that day.  I hoped to carry him to 40 weeks despite his diagnosis, even though that didn't happen I am grateful for all the timeI did get to carry him

As time goes on I get more and more emails from p families that have found my blog.  I'm so glad they feel open to reaching out to me and seeking help in their journey.  There's nothing more important than reaching out and realizing you are not alone in the journey you travel. Having the love and support of others is one thing that keeps a person sane, no matter what stage of the journey you are experiencing.

Because I receive so many emails at this point, I've decided to open a Facebook group where the families that email me can gather and hopefully get support and love from others traveling similar loss journeys.  I realized in an email today that I am not always going to be the best person to help another, sometimes someone else in the circle I've surrounded myself with can relate better. I really try to keep in touch with the families that contact me as best I can, but as that list gets longer and longer it gets harder and harder.  So I'm seeking the help of all these families, that they may be able to support each other as much as I try to support them.  If you are interested in joining feel free to email me and let me know. It is geared towards late term losses, whether that be an adverse diagnosis such as Potter's Syndrome, or another cause like incompetent cervix.  I hope it'll become a place where we can gather and support each other during good times and bad.  A place where we can give virtual hugs and celebrate rainbow babies.  A place where a person can vent and release emotions when the rest of the world doesn't understand.

Gabriel is making waves in people's lives, I'm grateful that his memory lives on and I have been provided an opportunity to show love and support to others who need it.

Happy 2nd Birthday Gabriel!!

HAPPY BIRTHDAY GABRIEL! 

It's hard to believe it's been two years since Gabriel entered the world, and quickly left.  We have all changed so much, I'm not sure I recognize the old me anymore. Gabriel did so many wonderful things for us and our friends/family in his 35 minutes, it's amazing to me the impact he's had on this world. 

Leading up to his birthday was rough.  I wasn't sure how I would be emotionally this year, and honestly there's a large part of me that thinks this year was worse and harder than last year. Perhaps I've realized all that I'm missing out on with him not being here. Perhaps as time goes on I miss him more and more since it's been so long since I've seen him, touched him. 

When Gabriel was born, I kept saying that I wanted to serve Angel Food Cake on his birthday each year. Last year I didn't get to do it so I knew I had to do it this year. The day before his birthday I made Angel Food Cake Cupcakes with Strawberry Buttercream frosting. It was my first time making Angel Food Cake anything and I don't think they were too bad!  

I worked Saturday night. I should have taken it off, but I didn't.  I knew I would be working through his time of birth as well as his time of death. Work kept me fairly busy, but coincidentally 2:35am - 3:11am was fairly calm.  I spent the entire time thinking of that time two years ago. The moment I held him, kissed him, and loved him.  The moments I could hear him trying to breath and telling him he didn't have to try so hard, it was ok to let go, and we'd be ok.  The hardest thing I ever did was tell my son that I love him, will miss him, and that it's ok to let go if he has to.   

Very shortly after I got to work, I received a text message that would alter the entire night as well as Gabriel's birthday.  There is a mom that I've been talking to, I was put in contact with her through a friend (her cousin).  For the last month she's been due to have her first baby, a son, with a similar Potter's Sequence diagnosis as Gabriel. He had kidneys, but they were not healthy and not functional.  His prognosis was the same as Gabriel's.  Around midnight I received a text message that at nearly 39 weeks she had gone into labor. She was in the hospital and our boys would likely share a birthday.  It took me a little bit to wrap my head around. My initial reaction was exactly this: "Oh God, please not today. Please don't do this to me today. She'll need me, I can't do this." After a short time I realized how special it is that our babies would share such a special day and suddenly I was ok with it. I was able to text her all night long, worry about her, send thoughts and prayers for her, and I seemed ok.  I went to bed in the morning fully expecting to get a message that he had been born, but he hadn't yet. In fact he wasn't born till 3:37 that afternoon. He survived for 40 minutes with his mom and dad before Gabriel took him by the hand.  Gabriel received a very special, but unfortunate, birthday present this year: A new friend.  

Last year his tree was taken along with the solar lights and ornaments. Already this year, when we arrived at the cemetery, we noticed his hook was gone. This hook was placed there before his stone was placed there.  All the other people's hooks and stuff were there, where did his hook go?  I was heartbroken. It was there just last week when I went out to see him... 

His missing hook..... (old photo)

At 6pm a bunch of our friends and family gathered at the cemetery to honor Gabriel  and light his Christmas tree for his birthday. It was bitter cold - maybe 10 degrees.  His stone was buried and had to be cleared of all the snow and ice that had covered its surface. I had my phone plugged in the car on the way there, it had significant battery life. Naturally as soon as we got out there, it died. It was even showing me the symbol to plug it in. I had music selected I was going to play and everything, but with no phone I couldn't do it. Naturally as soon as we got home, it turned on and had 60% life. It was ok, I just didn't have my selected music and couldn't take my own photos.  

I was overwhelmed by how many of our friends and family were there for us this year, what a special blessing to have such wonderful people in our lives who are willing to bear the freezing cold to support us. We served hot chocolate and handed out ornaments for everyone to put on his tree. People were invited to bring an ornament of their choosing if they wanted to - and some did.  My step mom brought flowers that they had put at the church earlier in the day. We waited to light the tree until everyone had a chance to put an ornament on it and his birthday candles were lit. Everyone sang Happy Birthday to Gabriel and we watched the birthday candles burn.  As we left, they were still burning. 

Derrick had brought the candle we had burning in Gabriel's honor at our wedding.  We also placed a little candle in a heart shaped votive for baby Kade who had been born earlier in the day.  After lighting Kade's candle I shared his story, many thoughts and prayers were sent up in that moment for that little boy and his family.  

Kade's Candle

We also collected some toys for Toys for Tots. I'm taking them over to a huge Christmas display tonight and Evelyn will put them in the box just like she did last year.

This will likely be our tradition every year. On his birthday I will invite anyone to join us as we go out, light up his Chrismas tree, light birthday candles on a cupcake, drink hot chocolate, and donate to Toys for Tots.  It's pretty perfect for us. 

10 month update

Our 10 month update comes a week and a half late. Why might you ask? Because life is ChAoS right now. We had an out of town wedding, photos to process from that, working random week nights, thanksgiving week, catch up weekend... It's been insane. Plus the boys have been  going through some sort of separation anxiety  or something. They are not satisfied unless I am holding them, one in each arm. That doesn't leave any arms for laundry, dishes, typing a blog, playing with Evelyn, or any other thing I really should be doing during the day. Heaven forbid I leave the room. Both boys break out in song... Duel melodies of crying and screaming. It's deafening. If I dare sit on the floor I am quickly attacked by two crawling terrors and am tormented with their hair pulling and face grabbing antics (obviously I have no open hands to deter the attack with so I mostly just have to take it). 

Cloth diapering is going great. We have our system down, we're used to it, and the process is so much easier now that we've found our groove. I have to rethink our overnight solution as they have started peeing through them now. Diaper laundry got past me and I ran out of diapers. I went out to the store and bought a $10 pack of 31 disposable diapers. First of all, it took me like 10 minutes just to figure out what size I should be buying and which ones. Those 31 diapers, lasted us just over 2 days. Yikes. If we used only disposable diapers, each month that would cost us upwards of $150! Double yikes! 

Last week I gave up breastfeeding. My supply had tanked dramatically and I was only able to feed them twice a day. Nothing I could do was bringing it back. We supplement with milk I've frozen and formula.  One $15 can of Similac lasts us just under 2 days. Ouch!  If we used only Formula, each month it would cost us about $400! Triple double ouch! But my weight bottomed out at 121, that's 19lbs below my normal and ideal weight. But a week after quitting I had already gained 7lbs back. I think my body is rejoicing.

The boys have now moved into mostly 12 month clothes. 9 month still fit, but some are a bit snug, especially if they are in cloth diapers. It's getting very cold here so I've had to remove most of their 9 month clothes anyways because they were all summer wear.

The last month has been pretty chaotic around here! There was Halloween and thanksgiving.  Both boys have popped through 2 bottom teeth. Logan popped his through at the same time, and a week later Sawyer popped both his through at the same time. Logan started crawling and Sawyer followed suit 2 hours later.  Logan says "mamama" every time he sees me and Sawyer says it just to say it. Logan learned how to wave (just holds his hand up, no actual physical waving included) and Sawyer learned how to clap. A few weeks later Logan figured out how to clap so they started clapping at each other. Logan started walking when you hold his hands and Sawyer started doing it about a week later. This week they both learned to pull up on things and last night they climbed the stairs. 

With Gabriel's birthday coming up, I'm starting to struggle a little bit. His birthday lands on a Sunday which is mighty convenient, we'll gather at the cemetery and light up his Christmas tree. I'm planning to try to make Angel Food Cupcakes and got chocolate for the occasion to celebrate. The part I'm struggling with as his birthday draws near, guilt.  I felt it last year but not as intensely as I am this year.  I think part of it has to do with the added emotions of sweet baby Abigail surviving the very syndrome that took Gabriel from me. But mostly, the boys are here this year. I feel guilty that we "moved on" so quickly, 6 short months after he was pulled from our arms, we were expecting again.  We weren't replacing him, we weren't trying to forget him and all that happened to us. Does he know that? Does he get it? He knows we still love him, right? I can't give him kisses and tell him to his face that I love him, but he has to know... right? He knows these boys aren't here to take his place or to make us forget, I hope.

Logan

Sawyer

Missing him.

Someone once told me something after Gabriel was born that I've kept with me throughout our journey. A little piece of wisdom that has stuck with me from the very beginning.  When you are pregnant, you share blood, cells, and other things with your baby. Those things stay in your system for life. So for the rest of my time here on earth I will carry a small part of Gabriel (and all of my kids) with me everywhere I go.

This bit of information, this thought, has carried me through some of the roughest days. As I continue to plow through those rough days with that thought in my mind, I know I can keep going.  I don't know if it's actually a fact.  I don't know if they could even scientifically prove that. But I will live the rest of my days believing that a part of him is still physically with me everywhere I go.

With his birthday coming quick and plans in the works, I struggle daily and think about him with every minute that goes by.  From the outside it may seem that I'm wrapped up in the tantrums and crazy that is a 3 year old, or the chaos that comes when you enter twin territory. But inside I am wrapped up in Gabriel. So as I forget things, seem too busy, ignore your texts and calls; please understand that I might be having a quiet moment to myself dreaming of who he may have become.

One day last week I wondered: Will it always be this tough? Will I ever get to just "move on"? I know from my amazing support group that it doesn't work that way. I will always have moments of sadness that will consume my whole heart. The year he should be starting kindergarden, the year he would be entering high school, driving, graduating... Those anniversary dates will never go away. I just need to feel each day out as it comes and go with it.  Then someone shared with me a story about her grandmother. After she passed away they had found toys in the top drawer of her dresser, toys she kept that belonged to a son she lost... She kept them with her all the days of her life, till there were no more.  That story hit home, I want that to be me. I want my kids to find belongings that were his, for them to always know that I never forgot about him. And so they'll know that after so long, I've finally been reunited with him. I want to be the 90 year old woman who continues to love and honor my son.

SIDEBAR: 

I'm going to curse myself by updating with this post...

Last night we received a small blessing.  The boys both slept from 1am till 8am (Sawyer) and 9am (Logan). 7 hours straight, at the same time... I feel like a whole new woman.

I'll post more of an update about the kids in a couple days, when the boys turn TEN MONTHS OLD!

Updating

I'm sitting in my van, bored with nothing I can do. Why you ask? Because I really needed to go to the store, when I got there all 3 kids were sleeping, and its cold with rain. I refuse to haul 3 sleeping kids out in the rain... So even though I'm home, I'm trapped in my van and bored. If you're a parent, you know what I'm talking about, I'm sure you've done it too! I do this all the time, where do you think I find time to update my blog?! 

So onto some updates. We're doing good here. As good as we can be with a 3 year old smarty pants and two 9 month old boys who don't sleep through the night, not even close. 

Two weeks ago Logan spiked a 103 fever and the next day popped out two bottom teeth. Ouch. This week it's Sawyer's turn. On Friday he spiked a 102 fever and is pushing through his two bottom teeth. Also on Friday Evelyn was diagnosed with pink eye and put on medication.  It's fun times in our house right now. I will say this though, the last month or so Logan has been a grump. A grouch. A Cranky McCrankerson. But, since popping through those teeth he has found his smile again. It warms my heart and brightens my day. Sawyer has pretty much kept his smile and giggle - little turd.  

Both boys are just on the verge of crawling now, Logan has figured out he can, he just has to get coordinated haha! 

Halloween was chaotic. After dropping daddy off at work I came home to dress the kids up. The boy's bear costumes (that fit last week) didn't fit. Nope, not even close. I got Evelyn ready to go and we went for lunch at daddy's work. While eating I had a thought: if I cut the bear costume in two at the waist, it'll become a sweatshirt... I had sweatpants to match... I knew this would end in disaster. It didn't! It totally worked and the kids looked so cute! We drove 25 minutes to my sisters, 25 minutes to my dad's, 10 minutes to a friend's house, 30 minutes to my grandma's, 15 to pick daddy up from work, stopped by his boss' house and then his mom's. The kids were angry by then and completely over it. I was too. I lugged 3 kids across many miles by myself. They were angry, but I was exhausted.

On Friday I had an emotional time. A dear friend's son (same age as the boys) was seriously injured at daycare. He hit his head and was unresponsive. Mom had a long drive to the hospital where he was airlifted to, unconscious and intubated. My heart stopped. "Oh god, please do not take her baby boy, please do not make her endure that kind of pain, heal him... Please." My stomach was in my throat the entire day, I worried and cried and talked to Gabriel the whole time. "Be there with that sweet boy, if you can heal or comfort him please do. Put your sweet hand on that mommas heart and give her strength. Give her the hug I wish I could give her myself." A bunch of us got together and thought out plans to get supplies to her. A friend of mine from outside of the group thoughtfully picked up and delivered dinner to the hospital for us. I couldn't stop the tears from coming, especially seeing photos and updates. That night, right before I clocked into work, an update was posted that he woke up! Perfect timing and perfect start to my night at work. He's been progressing ever since. 

It was a tough day, knowing her and that her son was so seriously injured was scary, devastating, heartbreaking. I wanted to step away from it, hide my heart from hurting. I couldn't do that though, I needed to continue to pray for him and see how he's doing. I needed to watch for an update, good or bad. 

Breastfeeding: it's coming to an end pretty rapidly. We are supplementing about 50% of the time now. My supply is tanking and nothing I'm doing is helping. I've lost a few more pounds that I worked incredibly hard to put back on. I'm certain they'll be completely weaned before they hit 10 months. Maybe I'll regain some energy! 

Cloth diapers finally caught up to me this week. With Halloween and other things I fell extremely behind on any and all housework. I actually went out and bought sposies because I ran out of cloth... Oops. Derrick was able to catch up on much of the housework and even did the cloth diapers this weekend, thanking my lucky stars for that - my house was a wreck! 

Well, the boys are starting to squirm in their car seats so I better get running again, quite literally. 

Take care!