Today 1 year ago...

I gave birth to our son who had already left us to go be with Jesus and his brother Bennett in heaven. This loss wasn't out of the blue we knew from week 20 that we wouldn't be bringing our little guy home with us, but just because you know it's coming doesn't make the fight any easier. I say fight because we fought for his life we advocated for our son, we demanded answers I was not backing down this time around.

With the loss of Owen's brother Bennett back in 2019 I will say, he taught me to advocate for myself. I take a lot of pride in that ability as I had no clue how to advocate for myself prior to his birth. Loosing a child is traumatic in its self, but having some of your medical team just not even have a clue on how to talk to parents who have just had their dead baby takes it to a new level.

After finding out about Owen's conditions at the birthing center they really did an amazing job on advocating for me and getting us into see a specialist pretty quickly. We got hooked up with a Dr. who, to my surprise, was amazing and she took my very BOLD straight forward maybe kind of bitchy personality very well. I'll never forget us meeting her and me going off saying "We will be getting answers this time around. Your first goal is to save my son, and if that's not a possibility your second will be getting answers. I don't really give a shit what it costs"

of course, she was wearing a mask (Thanks Covid) but you could tell she hadn't met someone quite like me. lol I remember her saying "you're very weird... In a good way" because we didn't cry I was very level headed and was VERY clear what I expected her and her team to be doing for us. Every time I had to go into the office I was about to have an anxiety attack the PTSD was REAL! But, They were always very nice and the manager always knew who I was and knew our situation and was prepared for my dark humor. I'm sure most people reading can say the staff will make or break your experience, and they made mine. SO MUCH LOVE for the people on my MFM team.

After our 20 week scan we did get to have 11 more weeks with Owen, what a blessing! We only got 11 days with our son, Bennett. We weren't expecting to have all this time. In this 11 weeks I went to the Dr every week to check on him. I had a doppler at home so I would check on him pretty often. Owen wasn't able to move his arms and legs so it was always hard to tell if we was still alive or not, but I would check on him before leaving for Dr. appts and I remember one particular office visit they weren't able to find his heartbeat because mine was so fast from anxiety I thought "I just checked him before I left he's gotta be there" but the panic doesn't stop just because he was there 45 minutes ago. My amazing Dr. comes in so calmly and says "let's just get an ultrasound to see" and he was still there! Then I could breath again. I swear I left so tired from those visits from my heart working double time. lol

Lets talk about insurance... It's DUMB! putting it nicely..

To get the tests we needed to find out what was going on with our kids we first had to get a test I did back in 2019 with Bennett that came up with no abnormal results.. Why would they want to run tests that didn't pick up anything last time? Because they're dumb. Just like we expected we ran that test and nothing came back so then we could wait on approval for the amniocentesis. Everyday felt like we were just one minute away from running out of time to get answers so we didn't have to have our baby cut open for an autopsy.

Thankfully, we were able to get that amnio done and In a couple of weeks we had answers. I thought having answers would make me feel like a weight had come off of me and it did the complete opposite. I got the call and they explained our boys had a genetic disorder called Nemaline Myopathy a rare muscular disorder. You can read about it here - https://rarediseases.org/rare-diseases/nemaline-myopathy/

Having this answer meant we had made the decision to not have anymore kids. They told us we had a 1in4 chance our bio kids would have this disorder but to us 2/3 kids having it felt like much more and we couldn't keep putting ourselves through it. This fact has been a separate grief process I've had to work through and continue to work through everyday. I don't feel finished, I LOVED being pregnant and I wish I could do it again, but Drew and I can't do this again.

The week leading up to Owen's arrival.

I planned all of my kiddos according to wedding season.. lol So Owen was due in February which was suppose to work out pretty perfect, but when your waiting on their heart to stop or for me to get mirror syndrome it can be a little inconvenient lol I had weddings every weekend in October, sessions all over November and Finley's birthday in December and then Christmas.. I made a deal with myself that I would never check Owen's heartbeat on the weekend because I just simply didn't have time to deal with that when I'm suppose to be at a wedding. I didn't have a second shooter or someone to call to step in for me or the money to refund a whole wedding so my thought was "he's gonna have to wait till Sunday. HORRIBLE right!? I may be a little obsessed with my job and avoided the trauma I knew was coming. It's the week of Finley's birthday party and I thought "how horrible would it be to miss Finley's party because we're having our dead baby? how hard is that going to be to call everyone saying we have to move it" So I prayed that he wouldn't die right before Finley's party or on a week I had a wedding.

We did make It through Finley's party with no problem so I thought.. The next day mid morning I thought "I haven't felt any little hiccups" and felt my belly and it felt very weird! I remember looking in the mirror pushing my belly and saying "you're gone aren't you?" I took a shower preparing for the phone calls I'd be making to my husband, Mother in law and the manager of MFM. I got the doppler out just to make sure and I couldn't find anything. I was told to come straight in but my house was a little messy so I ran around cleaning up doing dishes packing bags making phone calls and texting family. I was so calm, ready for this shit storm. lol My birth plan this whole time was a natural water birth. Obviously this got messed up since I wasn't at the birthing center anymore but I was prepared to still make the best of it I knew how to advocate for myself and I didn't really care how I came off about it. Getting the confirmation ultrasound was obviously so sad but finding out he was breech had me panicked and breaking down in a hallway when I saw my Dr. My fear was having a c-section and to me that was confirmation not only that my child had died but I would NEVER get the birth I dreamed of. My Dr. was so kind and gentle and explained that I could actually still deliver naturally because harm to him wasn't really in the equation since he had already died. This gave me immediate peace, and in this moment I'm reminded that God knows the desires of my heart and he knew how important this would be to me.

She said go eat something and come back at 7pm So, of course, I need comfort food so we went to Olive Garden, Let me just fill up on bread sticks before we go do this.

Getting checked into a room we met our nurses and like I said staff will make or break your experience and they made ours. The COOLEST nurses and quickly adapted to dark sense of humor. Which was nice because we didn't need formal relationships we needed people to just laugh with us and make this devastating time a little more personable and for lack of better terms FUN. They respected my requests of as NATURAL as possible! I knew if I was going to have to get Pitocin it was going to be way more difficult and I needed their support and not to push shit down my throat.

One thing I knew earlier on, is that my awesome MFM Dr wouldn't be able to deliver Owen because they don't do deliveries which I wasn't happy about because she knew me, we meshed well which so important to me after Bennett's delivery I didn't care for the Dr I got for his delivery. So, meeting the Dr on call was kind of scary. The Dr. we got to begin with was a very nice man he seemed to value my opinion and do what I wanted no questions asked. He said "whatever you wanna do" which was great to hear because I needed some control.

We started with a cervix softener which last time didn't work that great and made me so sick, so I was kind of scared to take this but it was working this time WOO HOO! (small victories)

The next day was full of cervix softeners and tv watching hoping It continued to work! There was a shift change in there so we didn't get that first Dr. long, I didn't care for the next Dr. She didn't seem to value my opinion as much and didn't listen to me when I expressed that the change in cervix softener didn't feel like was working as well, but we get what we get. Eventually, I felt like it was kicking back in I was pretty crampy, I had to quit eating my Jets pizza because I was getting pretty uncomfortable. It felt like I was just in a constant period cramp which wasn't nothing, but it wasn't consistent contractions. Finally I just got annoyed with this cramp that never went away so I got in the tub which kicked in some real timetable contraction yey!!! My body was DOING IT! I can't even explain how happy and proud I was of this lol I just had to keep them going! I got tired and laid down the contractions were pretty intense, but nothing I couldn't handle. Being able to relax during labor is hard but I was actually almost asleep when I felt something.. It hurt like hell but my water broke all over the place and my father in law and sister in law were like "WELP we're gonna step out" lol I was OVER THE MOON! My body was DOING IT! I felt like a kid learning to ride a bike lol

"I'm doing it! I'm doing it!" I kept telling Drew "that was awesome" I actually found out later that my father-in-law was praying in that moment for something to progress. So, just another cool way God showed up for us.

Obviously I needed a shower now and the contractions were STRONG I wanted to sit in the tub and go through them that way which as part of my birth plan. I couldn't get comfortable in there because those tubs are so long and I got short little legs I couldn't touch both ends of the tub without being flat on my back which every woman knows isn't comfortable when you have 10 extra pounds in a ball In your belly.

So I had a request for the nurses... Which I know left an impression because I've seen one of the nurses since then and she said she'd never forget it. lol I needed a hammock... To keep me up right but still be able to relax by legs and pelvis in the water, So I explained to them the "design" for said "Hammock" and they couldn't see the vision at first but once I asked for a sheet and showed them where I wanted to tie it they got it and did exactly what I wanted. It makes me laugh to this day that they were so on board with my absolute crazy request. I'm sure once they left the room they were talking about this crazy chick they had to take care of, but Their willingness to do these things for me made a huge impact on the way my labor went. It was time to get out of the tub and rest again. I'm not sure on the timeline of everything but it wasn't long before I felt like it was time.. I had the Dr. come and check and I wasn't quite ready yet and Owen had kind of rested on one side of me so I needed to adjust how I was laying and let gravity do its thing. A few contractions later I felt like it was time to push so they came back in and did a couple practice pushes to which I delivered his leg... yep you read that right. just his leg. The Dr. said you still need to dilate a little more to be able to get him out so ill be back little later.. OK by this time I was pretty damn tired and it didn't register that I had my babies leg sticking out of me. I had to ask my mom if that's what I heard and she confirmed that was in fact what she had said.. I just didn't even want to move at this point I didn't want to feel that. Within a few minutes my body was pushing on its own so I called the Dr. back in and we started pushing again.. It took a lot to get him out because I guess I still wasn't dilated all the way but my body didn't give a shit it was ready. Looking back I wish I would have advocated for myself to push on my knees to have the help of gravity but I couldn't I was SO TIRED and SO DONE!

Remember when I said staff will make or break the experience? Well This Dr. who I didn't care for was the one there for delivery and she said something in the middle of my birth that just didn't need to be said, It wasn't productive she's lucky I was all out of fight at this point.

Our little guy was finally here! weighing 4lb 3oz He had a cleft lip, clubbed hands and feet but A LOT of hair! I couldn't believe the amount of hair he had for a 31 weeker. What I wasn't prepared for was the fact that I didn't realize how long he had been gone and his body had already broken down more Than I was expecting. I expected to be able to see him with skin, I looked forward to that, to be able to have the memories of what he would look like if he was alive, but they thought he had been gone for 4-5 days. I thought "how did I not notice!?" My stomach didn't feel different until 2 days prior, but I prayed this whole time that having him would not interfere with Finley's birthday and he gave that to me. Did I need to see him with skin? No, but it is something I was hoping for. The good thing is I know where he is and I'll get to see him again one day.

After it calmed down Our lovely nurse and friend, Rachel who we had with Bennett's delivery came to tend to Owen just like she did with Bennett she is seriously a gift from God. She fills the room with light in such a dark time in people's lives. We can't thank her enough for the work she does. She checked him over and pointed out things we hadn't yet seen on him and just loved on us. She said she'd come back the next afternoon when Finley and our photographer would be there to help with dressing for pics. We rested for a few hours and my goal was to get out of the hospital so we could be with Finley for her birthday on the 22nd... Yes Owen was born 1 day before Finley's 2nd birthday and this was another thing I prayed for, I did NOT want him born on Finley's birthday. Isn't god so kind with his timing?

Finley came to the hospital and we had no clue what she would think.. lol She actually poked him and licked her finger... LMAO! so now we can tell he later in life "you licked your dead brother" (little weirdo) She wasn't super pumped to hold him but I wasn't going to force it I just wanted at least one photo of my kids together. I made sure to bring Bennett's bear to represent him in the photos too. Having these memories was so important to me. So when a fellow photographer offered to come take our photos when he arrived it was just... So kind, because who the heck WANTS to do that? She did though and I love every photo. Another thing that was important to me was to have photos of us smiling with Owen because, with Bennett I physically could not smile which is Obviously normal but I'm so proud of Bennett and he really does bring me joy so I wish that's something I had. Photos were actually really overwhelming for me I felt some panic coming on but we got through it and Finley went back to her Oma's until we could leave. When the room went silent the realization of "this is coming to an end" hit and I just broke down. We discussed what leaving would look like for us. Do we want someone to come take him? Do we want to leave with him still in the room? Do we want to take him downstairs ourselves? Ugh, None of these options sounded good. your maternal brain can hardly comprehend leaving your child at the hospital. I knew leaving him in the room wasn't an option because I'd feel like I was abandoning him, Which isn't what was happening at all but that's just what it felt like. Taking him downstairs or wherever he was gonna go sounded scary so we let a nurse come get him. You're never prepared for the door to close with your baby on the other side, but we had another child who's birthday was the next day and we had to get out of there so that's what we did The ride in the wheel chair down to the exit of the hospital with just a small box of thing to remember your child by is a shitty ride 1000/10 don't recommend.

I know this story is so sad, but I'd like to highlight the blessings that came from Owen's life.

Peace

Wow, the amount of peace I had throughout those 11 weeks was incredible.. I knew this time around where God stood with me. He wasn't abandoning us, he was right there the whole time. Now, I'm not saying it was a sunny walk in the park we had some HORRIBLE days, but I never felt alone, or questioned the faithfulness of our Father.

The Timing

I mean, we're never happy about the timing of loss. It hurts. But, we were home for Finley's birthday and didn't have to miss a wedding or her party!

The BOOB MILK!

6 weeks of pumping over 400oz for donation!

Our People

The support we were given by all of our family, friends and medical team.

I feel like I smiled most of the time writing this blog and I think that says a lot about our experience and how we view it. I'm not great everyday sometimes I can't see the blessing in the situation but the more I talk about the boys the more I can pick out where God's hands were. Somewhere in those 11 weeks I remember sitting in my car at home praying asking for guidance or just speaking with god about being scared of making decisions if he was born alive or if he lived would we be good caretakers for such a medically complex child I felt in my heart right there that God told me "I'm bringing him home" I verbally said "okay then" and got out of my car. But, I have such a controlling personality that I tried to control the outcome even though I KNEW he wasn't going to live. I wish I would have fully surrendered to those words and not stressed so badly during this pregnancy.

I'm glad I have that lesson though. It has made me even more dependent and faithful.

Okay, Lets get to the photos of our little family!

First, I want to thank a few people who MADE our experience.

Dr. G & Lori for vibing with my bold, bitchy personality and advocating for us.

Ella & Rachel - for being our Kick ass nurses who rolled with my stupid requests. lol

Rachel- who loves on all the dead baby families. You the real MVP.

Kristi- Our Maternity photographer

Holly- Our (would you call that a fresh 48 photographer? lol) in true Madison Fashion we're calling her our Dead baby photog. Also MVP status.

Brooke- She hand made Owen's outfit it was beautiful!

Okay, Here's where you need to hop off if you aren't ready to see our little guy, Thanks for reading and remembering Owen with us today!

Photos by: Holly Haberkorn