Skip to main content

4/25 This Blog

April 25, 2018 | 26 weeks

I began documenting our story in this blog, and today I shared it online with friends and family.

I share in hopes of supporting others going through the same thing. This is the kind of information I was hoping to find online & it's not really out there. I found bits & pieces in various forums, but I had such a hard time finding complete stories online, especially since so many women are pressured to terminate, that I wanted to share my story here, to give other infantile polycystic kidney disease moms an idea of what lies ahead.

I share because I have felt so comforted when others shared with me. I just had another mom from church over. She had 2 babies in a row (her first 2 pregnancies, actually) with another genetic disease & each died at around 22-24 weeks along. She shared her story with me and then also invited me to read her online journal which chronicled everything from start to finish. It was really comforting to hear her talk about it & to know that she fully understood what I am going through. To be completely honest, it was actually kind of hard to read the online journal, especially the ending where she discussed the labor & delivery & funeral, but even that was still strangely comforting, too.

My story is hard to write sometimes, and I imagine the end will be the most difficult to write. It may be hard to read. But that's ok, because this whole experience is hard, and I don't want to pretend that it's easy.

This blog is to share my story & share some of the more detailed information, like how much fluid I had, how far along I was, what baby's measurements are, how I shared the news, how the birth will go, what we'll do with baby's body afterwards...all those hard decisions nobody wants to ever have to encounter. If this is your reality, as it is mine, then these are the things that have to be thought about, talked about, decided upon, dealt with.

In all my online searching, I wanted to come across someone I could identify with. I wanted to know I wasn't alone on this road. I pray somebody would be able to identify with our story & feel comforted in that.

This is for my kids to see how Mommy dealt with this. They'll have a different perspective once they're adults. I want them to always remember this little brother/sister of theirs. I want them to read this when they are parents. Read and relive it and remember.

This is for me and Aaron. 20 years from now, I'm afraid my mind will be so full of other memories that I will forget portions of this one. If this diagnosis truly ends up being fatal, as is predicted, then we don't have a lot of time left making memories with this child of ours. I don't want to forget my baby.

This is for anyone whose baby has this disease & is looking for answers, or just looking for some sense of fellowship.

And lastly, this is also for anyone who wants to know how to minister to & pray for those going through a situation like this.

Comments

Popular posts from this blog

5/31 Baby Mila is Born

. May 31, 2018 | 31 weeks Our baby Mila was born today. 3 lb 1 oz and 14 3/4 inches of pure bliss. She stayed with us just long enough to meet her brothers and sisters, and then she breathed her last and went home to our Lord. We had been looking forward to May 31 for weeks. I was impatient about it, even. It was the day that our second opinion was scheduled. I was eager to find out more information about our baby. Instead, I got to meet her face to face. The Day Before Wednesday afternoon, just after 3 pm, I noticed that I had some sort of a discharge come out of me, out of the birth canal side. It was only a little bit. When I wiped, it kind of looked like diarrhea (an olive brown color), and I thought I must have leaked something when I passed gas. Super embarrassing. But anyway, when I wiped my other end, there was no sign of diarrhea whatsoever. So I googled it and concluded that it must be the beginning of some sort of infection, and I resolved not to eat any more chocol

Daddy's Reflections

As a husband I can’t directly relate to my wife through pregnancy and motherhood. Those things are uniquely feminine, and I am of no help to guess what Delia is feeling. I can learn from what she expresses, and I am really glad that she has been open to me and that she has now written these posts. It gives me a glimpse into the mind of the strong, Christian woman that I married going through the trial of her life. I always need to be the leader in our marriage, but I’ve had to walk that delicate balance between being a dictator and being aimless. The decision to choose hospice after birth was the direction I saw Mila’s health going, but I let Delia get as many opinions and counsel as she desired. I would have supported intervention if she insisted, because I love her and she is the mommy. Whatever she wanted for that day she would get, such as how she wanted to capture the day on video, or what personal items she wanted to have nearby. I trust her judgment, and so I trust being patie

7/26 Letting Go

July 26, 2018 | Week 8 It's funny how feelings can change in just a few days. Today, I'm feeling like I took a step backwards in the grieving process. As my final days of pumping approach, I find myself holding on and afraid of letting go. Seeing Mila's milk every day, writing her name on each bag every single day throughout the day has been so sweet & so special. I'll never get to fill out a form for Mila & write her name down on it. This is it. This is all I've had. These milk bags have been my only opportunity. I love writing her name down. I love that I think about her multiple times throughout the day. I don't want to stop thinking about her. I don't want "out of sight, out of mind", but I know that's how it's going to be. And I know that that's ok & probably even necessary. I'm feeling that all-too-familiar tension between life & death all over again. I want to choose joy and rejoice in life, but when I place