Delivery

My pregnancy with Kilian was stressful, to say the very least. On top of all the anomalies (Congenital Heart Defects, Bilateral Ventriculomegaly, Dextrocardia, single pelvic kidney, missing lung, Intrauterine Growth Restriction), it seemed like we found something new to worry about at every appointment. Plueral effusion, Hydrops, Pericardial Effusion, VSD, missing pulmonary vein, decreased/abnormal umbilical arterial flow, polyhydramnios, his vents would increase one week and decrease the next, heterotaxy, his femur was consistently under the 5th percentile...

I had a notebook that I would write everything down in, along with all of my questions.

Did he have a spleen or polysplenia? Would he suffer brain damage? Was he going to end up on ECMO? Would he have Primary Ciliary Dyskinesia? Open heart surgery? Was he missing his cerebellum? Would he have malrotation of his intestines? Was his IUGR asymetrical? The questions never stopped. I mean, I love all things medical - but this was just ridiculous. And..it was my child.

I had an amniocentesis, two echos, and nine ultrasounds prior to him being born. And none of these offered me any information I felt I could go on. Everything was a guessing game until we could have the fetal MRI done, and even then we would have to wait until he was here to have these tests performed again before knowing anything definitive.

The fetal MRI was scheduled for April 27th. A few weeks prior Kevin took me to the ER as we feared I was in preterm labor. Early in the morning I started having the worst pains, the kind that make you sob and double over - I could barely walk. It didn't feel like the contractions I had with Amelia, but to be on the safe side we decided to go in. Now this next part is so embarrassing, but part of the story none the less. They ran a few tests, hooked me up to a fetal monitor, and came back with what was wrong - inflammation from....constipation. You can laugh, we certainly do. So back home we went, thankful that's all it was.

Fast forward to Sunday, April 25th. I woke up at 2:30 am with cramp like pains. My pregnancy wasn't only emotionally stressful, it was physically exhausting. I think my body never wanted him, and it definitely voiced that opinion. I was miserable and at times felt like I was absolutely being ridiculous. The pains I had in so many places had me thinking I should be on best rest, but that stubbornness kept forcing me to suck it up. So the cramps I assumed were either constipation again (although this definitely did not feel the same), from my sciatica pain, from my pelvic girdle pain, anything but labor. Looking back now it was exactly the same as I felt with Amelia, but I had myself so talked out of that possibility that it never registered.

These cramps continued thru the whole day, slowing down at times which made me further believe it couldn't be labor. Just for the heck of it, I downloaded a contraction counter/timer app on my phone..and after three entries it advised me - head to the hospital! You're in labor! Again, I denied this..laughed it off and continued to work myself thru the contractions.

But eventually it was almost unbearable. The 'cramps' were following the length and timing of contractions, and once again we decided to 'be on the safe side' and at 4:30pm, headed to the ER. I will forever wonder if we had gone in sooner, would they have been able to stop my labor, and therefore prevent him from his preemie hurdles.

It felt a little off this time. The nurses seemed a little more concerned, and the vibe was just different. I once again put on the pretty hospital gown, and held Kevins hand thru the pain. The doctor came in to check me, and I honestly believed she was going to tell me it was nothing.

But it definitely wasn't 'nothing', and my heart sank when she said..."you're 6 centimeters dialated."

I looked at Kevin in shock and disbelief, and the tears welled up in my eyes. This couldn't be happening. I was just shy of 33 weeks, he wasn't ready. I panicked. I'd like to think I'm typically a level headed person in most situations, assuming I haven't 'had a few', but this completely set me off and I suddenly had no control of my emotions.

I cried as nurses and doctors started to rush in - many of them on the phone with others, explaining Kilians situation, trying to find anyone who was available. The air was thick with urgency and uncertainty. I was still thinking they must be able to stop my labor - he absolutely could not come now. It just couldn't happen. This could not be happening. They rushed to get IV's in me, unsuccessful with the first. They tried my other arm, during a contraction, as they rolled me on my side to give me a steroid shot in my butt. I felt like a pin cushion rag doll they were just tossing around. They most certainly were not treating me like this, but in the moment it's how I felt. They got the first IV in, and the second. The room was filled with people. I remember telling them that I was so hot, it felt like the bed was on fire and if I didn't throw up first, I was certainly going to pass out. The magnesium they gave me was causing this, on top of the amount of bodies, on top of the room temperature being up in preparation for Kilians comfort.

Before I knew it the stirrups were up, and they were telling me it was time to push. I fought this notion with every thing in my being. It didn't feel right. In fact it felt completely wrong. With Amelia, I was so confident. So excited, so calm, and so ready to meet her. With Kilian, I was plain petrified. All I could think about was how afraid I was to see him - I assumed he was going to be incredibly tiny and I didn't want to have him. My doctor broke my water, and she told me now, push! And I did, and didn't at the same time. I was combative I feel, Kevin on one side and a nurse on the other..they wanted my legs up and it hurt so bad, I wanted them down and fought them to do so. My position didn't feel right, I didn't feel ready, I wasn't comfortable, and I felt so out of control. I was terrified that he was going to get stuck, that I wasn't going to be able to do it. And I swear my screams woke the dead, from pain and from being so damn afraid - a release from all the emotions I felt thru out my pregnancy.

But after 4 pushes and at 7:05pm, less than two hours after arriving at the hospital, there he was. They put him on my chest and I remember looking at him. He wasn't as small as I thought he was going to be. He didn't look like anything other than a normal baby. I went to put my hands on him, and immediately took them off. I was so afraid I was going to hurt him, I couldn't bring myself to touch him again. Kevin was able to cut his umbilical cord while he was on my chest, and I have no memory of this - I hardly remember Kevin being there at all (and he is my safety, my comfort - the one I would look to in a situation like this). There's so many bits and pieces that I've blocked out, including them taking Kilian from me. I don't remember the nurses and doctors leaving. In fact the next thing I really remember is him being gone, just Kevin, myself, my doctor and a single nurse in the room. And I remember it was a sort of relief. The ordeal was over with it felt. And it was suddenly so quiet..from deafening chaos to a peaceful silence I hadn't felt since before I was pregnant - and I didn't even feel bad about it.

They told us that they should have an update in about an hour, and after an hour and a half went by I still had no concern about him. It was sort of an out of sight out of mind thing, and we were honestly pretty relaxed in waiting. But then, a nurse came running in and told us that he was going to be transferred to Milwaukee, and we needed to go see him now. No one was concerned about my maskless face as they put me in the wheelchair and we quickly went to his room.

We were able to sit with him for almost 4 hours before the transport team took him to Milwaukee. Kevin on one side of his isolette, me on the other. Both of us with our hands in by him, each of his hands wrapped around one of our fingers, and we just stared. Watching him breath and taking it all in. They performed all of my aftercare right there in that room, never asking me to leave his side - I will forever be grateful to Theda for handling these moments as they did.

When the transport team got there, bringing the total combination of doctors and nurses to somewhere over 10, they quickly realized the ventilator tube wasn't far enough in, and the lead doctor didn't feel confident that it wouldn't come out in the ambulance ride down. They were unable to airlift him because of his critical condition - which seems backwards from what you would expect, but they explained to us that in the event he needed help it would be near impossible in the helicopter. The ambulance was his only chance. So the ventilator tube had to come out, and he had to be reintubated - a task that they struggled with the first time.

Kevin and I had to back away, and watch helplessly as they struggled to get the tube back in. At one point, his heart rate went to nothing, and my nurse handed me a kleenex to wipe my silent tears. It was a somber, sobering lesson in how quickly life can be taken. Thankfully, they were eventually able to get the tube in and another nurse offered me a hug in relief as they once again stabilized him. The lead doctor of the transport team came to us in addition to the lead doctor of Theda, and they both explained what had happened, what was going to happen, and none of this I remember. They took some x-rays to ensure the tube was where it needed to be, and we watched as they took Kilian away.

It was 2 hours before we got the phone call that they had made it to the hospital. Information beyond this, I again do not remember. I think I maybe slept 2 hours that night, and in the morning they were able to discharge me and we went home.

Once again out of sight out of mind took effect, and we calmly prepared for the trip down to Milwaukee. In fact the car ride home would have made you think nothing was wrong, as we joked about Kilian keeping true to the family motto, 'well that escalated quickly'. We had maybe been home for an hour when I got a phone call from the NICU, and it started the panic all over again. It was explained to me that he was in critical condition, and repeated over and over that he was 'extremely sick'. They advised us to get down there sooner than later, and it was insinuated that it would perhaps be our last moments with him. Needless to say that car ride to Milwaukee was quiet, hurried, and one I wish I would forget.

Walking into Childrens Hospital, less than 24 hours post partum, being told where he was and directed on how to get there, are all things I remember. The walk to the NICU was so far, and I was so tired and sore - yet none of these things registered. I was a walking zombie, my mind completely shut off and walking into his room is something else I have no recollection of. In fact sitting here now, two weeks later, I can hardly remember those first few days.

We spent the night that Monday, and went home on Tuesday to be with Amelia - who we hadn't seen since Friday. In fact she wasn't even aware of what was going on. We told her shortly after we got home that she was officially a big sister, and it was less than the moment I had imagined when I first found out I was pregnant.

We had spent a lot of time preparing her for what this was all going to look like, and the first thing she asked when we showed her a picture was if the tube was helping him breath. That girl is smarter than a whip, and I couldn't be more proud of her on how she handled her emotions and the maturity of her questions.

We headed back to Kilian Wednesday morning, came home that night and spent Thursday with Amelia. She was starting to have a hard time with us leaving and the vibes, although we tried our best, left her feeling anxious. It was hard to leave him, and hard to leave her, and that battle remains - but we went back down on Friday and spent the night again, coming home Saturday night. The blurr that is that week is something I'm not even trying to sort out. It doesn't pay to. All that matters is that we went from believing we would be spending last moments with him and preparing for goodbyes, to being baffled as each day he improved beyond anyone's comprehension.

In fact as it stands today, I finally feel as tho he is ours, which I have never felt before, even in my pregnancy. There remains the thought of anything can happen, and we're not yet out of the woods, but we're getting so close to being so close. The improvements he has made has me picturing him here with us. I can almost imagine a future that he's included in. And those feelings bring a fear that I'm so exhausted with. But I will accept it and continue on, because he has already left his mark on everything that makes me who I am. That little boy is MY son, and I am absolutely in love with him.

Kilian, I pray for the day I am able to tell you your story, and how proud of you, your resilience, and your strength I am. With unmeasureable gratitude for being your mom, you are my breath and my soul, forever and always.