This journal update is to help answer the questions we have been asked and to share some test results. It’s gotten difficult to remember who we told what to, so this seemed to be the easiest way to update everyone. 

The biggest question we get is if we know why this happened. We’ve gone through a lot of testing and the only thing that has been discovered was that there was an issue with the placenta. It possibly didn’t attach well or it could’ve just developed wrong. I was tested for blood clotting disorders as that sometimes can cause this, but all my results were good. Some people know that we were surprised we were pregnant because I had a surgery scheduled to remove something that could’ve been causing infertility issues and also could have caused our miscarriage. Doctors don’t necessarily believe that was what caused the placenta issue but it is possible. Ultimately, we will never know what happened. Although that is somewhat frustrating, it was actually best case scenario because that means I am not at an increased risk of this occurring again. We learned that placenta insufficiency isn’t actually that uncommon, but it is uncommon to have it happen so early and to worsen as quickly as mine did. If we do get pregnant again, I will be on baby aspirin and be followed more closely starting in the second trimester. Due to the type of csection I had, I also would have to deliver via csection before 36/37 weeks.

One of the other things I want people to understand is that babies born that early can survive. We were originally told she had a 50/50 chance and I felt that after the steroid shots were absorbed her chances were even better than that. We learned that due to her size, she really acted more like a 22 week old baby, and those babies rarely survive. Brain bleeds are very common in premies (if you’d like to know why-ask me sometime and I’ll go trough the science of it all-it’s fascinating!). Some premie brain bleeds are not concerning, but what made Evelyn’s so severe was that it was a category 4 which would’ve affected her movement and then it spread to her thalymus. The thalymus basically is the hub of the brain where you receive and send messages. The Drs told us that brain bleeds there are uncommon. If she were to survive, Evelyn would not be able to think or move.

I’ve also realized that those who weren’t able to make it to our service may not have understood that we and our parents got to hold her in her final hours as we didn’t share any of those photos on social media. I’ve attached a few to this posting for people to see.

Lastly, while this has been a comepletely heartbreaking experience for us and we both still have our days, we are grateful for many things that happened:

1) That our doctor added an ultrasound to 
our appointment. If she hadn’t done that, we would not have discovered this. We were told that Evelyn would’ve died within me within a week. Although her life was short, we still got to be with her for four days. This allowed us to experience things like her holding our finger, moving her head to be by my heart, her clinging to Jeff, and her making a face when her nose was touched. 

2) The weather was extremely warm around her life (it’s hard to remember that since it’s been so awful since then but she was born on the warmest January 4th recorded in MN). Considering the family and friends that needed to travel to be with us, the fact that there wasn’t a blizzard or extreme conditions during that time made a huge difference.

3) She wasn’t born the day we went to the hospital like the doctors originally thought. The extra 48 hours allowed my parents to get in town and also allowed us the time to comprehend what was happening.

4) We lived less than 20 minutes away from the hospital. This allowed us to not only get there quickly, but also for easier trips for our parents and for picking things up from home. 

5) This all occurred right after I was home for Winter Break. I’m so glad Jeff and I had all of that relaxation time together before things got crazy. 

6) The hospital staff was amazing. We can’t reiterate enough how we know she got the best treatment possible. They also made sure we got all the momentos possible - we have plaster molds of her feet and her hands with ours, locks of her hair, and other items that were hers while in the NICU. 

7) One of the biggest things I’m grateful for is that she never coded in the middle of the night and we never got a phone call to rush down to the NICU. The two nights before she passed, I remember waking up feeling relieved that nobody called or came to the door so she must still be alive. We felt like we couldn’t go to even grab dinner across the street in fear of having to rush back. We were able to have everyone hold her and we were able to say everything we wanted to her. 

I could easily keep going, but this update has already gotten longer than I planned on. We want people to know that we are comfortable talking about it and are happy to answer any questions you may have. Words can not express how grateful we are for all of the love and support we have received.