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Our Story.

Waiting for Leaf's Birthday

Updated: Oct 24, 2022

Journal entry 10/6/14

"34 weeks pregnant

We’re up at the peaceful farm for a week, Brian’s parents are taking a turn with us. I must

say, I’m glad we have so much family up here (friends too). There’s something relaxing about being with people that know you intimately (usually-lol). Either way, we are in a good place the last couple days. Cord is sleeping, and loving helping Brian stack firewood and do other boy things outside to keep busy and be as normal as possible. I’ve had time to sit by myself (and think) and crochet and make Leaf’s little hat and her baby blanket.

We did have our OB visit with the specialists on Tuesday, and they said Leaf is up to 3lbs 11oz, and is doing great in there. My blood pressure took a jump this week (no idea why 🥴), but nothing to worry for (yet). My amniotic fluid level is back up to where it was when they flew me up here almost 2 weeks ago (2x what it should be). That’s what made me measure 40 weeks to begin with, and told my uterus to go into labor. They took 1300 ml of amniotic fluid out (therapeutic amniocentesis) the morning after we got to PSL hospital, and here we are again. The increased amniotic fluid levels are caused because baby Leaf isn’t able to swallow fluid like she should, so it just builds up in my belly. No drastic changes in my cervix, a few more big contractions, but nothing to write home about. It’s hard to not live in this waiting game. The genetic specialist visit on Tuesday reiterated a lot of the specific issues Leaf has, and more of what to expect with her specific situation when she’s born. It’s amazing how different each little one’s outcome is with Trisomy 18-none the same, none to compare with really.

I was reminded today that God has been preparing my heart for a long time to have a special child. When I was in 3rd grade I was always drawn to Chris, a special needs kid at my school. In the 8th grade we had a “kindergarten buddy” program. I requested a special needs child if there was one. I had no idea where this tug came from, but now I think I know. When I was in college, I remember thinking I’d like to someday adopt a Downs syndrome (Trisomy 21) baby someday. Not sure why, but specifically a Downs syndrome child. I had never heard of Trisomy 18, but in my mind God had laid that on my heart. Then I got married, and we had Cord, and although we discussed adopting, we never discussed specifics. In the back of my mind, I always new we’d have a special child. God new… He’s been carving out a part of my heart specifically sized for Leaf, and our situation with her, for however long we have her. Crazy huh? Maybe not so crazy when you think about the vastness of Jesus.

A small smattering of cards and gifts that were being sent to us, one by one... by our lovely community

Today we took Cord swimming. He had a blast with Brian's sister Sarah. I can hear Brian outside right now cutting wood with the chainsaw-a favorite activity for him. I’m sitting on the couch in an empty house, feeling Leaf push around inside my belly. Just feels so good to normalize our life right now... I think. We're in the middle of a tornado, and it actually feels pretty calm most of the time, if I give in to the peace...

We are so grateful for all the encouragement coming our way daily. Please continue. Love you all so much. We feel so surrounded by our people right now, and it feels amazing. Thank you for helping us through this."

We really felt peaceful this week. The local perinatal hospice organization, String of Pearls, sent us a huge gift basket with all the lovliest etsy-style thoughtful & sweet items that helped us get started grieving & memory making. Wow, did I feel special when I opened this box. Who was this woman, and how were we so lucky to be in her care? We also talked a few times with Laura, from String of Pearls. She listened as we talked through all the things my heart was feeling. She supported us and validated our desire to spend more time with our baby, and stay pregnant. What a sweet soul. All she’d say was how courageous I was. Many years later, when I did my master's capstone in perinatal hospice, I'd look back and realize

that all the things she was doing were evidence based to help support our grief journey, which would decrease the likelihood of us getting a divorce, have anxiety, depression, PTSD, and increase our ability to parent future (and present) kiddos better. One of the ideas she suggested was to get 2 blankets, one to wrap around Leaf at birth and send her in, and the other for us to keep, as a keepsake.

At the prenatal visit this week, they measured Leaf's head for me. Since she was so small for her age (SGA), I thought baby hats would probably be too big for her. I decided I'd crochet her one. I went to Hobby Lobby and picked out the sweetest, softest yarn colors for matching baby blankets & a hat. I sat on the couch every day, looking out the window of Brian's parent's house, onto the silhouette of the front range range mountains. This was my precious time

with Leaf. She'd kick, I'd put my hand on my belly, and we'd BE together for moments, hearts touching. All of this, taking care of my baby and spending time with her, making her something soft, giving her a few more days with us... this was me mothering her... and it made my heart full. I didn't realize it at the time, but it was also helping me say good-bye.

On the topic of mothering, I was curious at this last prenatal visit, if I'd be able to breastfeed Leaf, when she was born. Something in me wanted to nurture her, and I identified breastfeeding her as one way I could do that. I asked the MFM doctor seeing me that day, if that was a realistic expectation. He said, in the most condascending tone that, of course I wouldn’t, and commented, didn’t I realize that she couldn’t swallow (esophageal atresia) and wouldn’t have the mental capacity to suck?! Needless to say, I started tearing up. I decided I didn’t like this doctor. Didn't he realize I was new to all this? And I was grieving, holding onto any hope I could conjure. Maybe my head was in the clouds, but I was just trying to maintain some level of hope. The ultrasound tech was in the room when he said that. Appalled, she comforted me, stating he had a reputation for poor bedside manner. Well, I sure hoped he wasn't the doctor on duty when I went into labor. I can think of several other ways he could've conveyed the same information, but in a more thoughtful way.

As the conversation about birth became more relevant (with amniotic fluid back up to levels that put me into labor before), String of Pearls had more relevant suggestions. Laura offered to send us a birth plan template, that we could personalize. There were several choices for those that know they will likely lose their babies. Lovely! All of a sudden we felt like we had a say in something (before this, we were completely at the mercy of the situation and the doctors). How beautiful, to give the family some control in a totally hijacking situation. This woman was an angel. Some of the options were normal birth plan things, like our plan for the atmosphere in the room, people coming and going, etc. Cord clamping wasn't really relevant, but I could definitely have chosen delayed cord clamping if that made my heart happy. Baby can come directly skin to skin, etc. Then there were some other more specific options, like what we wanted to do for life-saving measures, surgery, assessment by neonatologist after birth, etc. Other options pertained to comfort measures at the end of life, like whether to apply oxygen, administer morphine when breathing became agonal (end of life), etc. I had no idea where Brian and I stood on some of these things. We now had some discussions to have before birth.

Another offer from Laura (String of Pearls), a photographer to come take family pictures after the birth. Yes- what a genius idea! And it was free?!? The organization was called Now I Lay Me Down to Sleep and this is what they do. Laura also offered to orchestrate the funeral arragengements - everything from the hospital to the crematory. All the arrangements were free as well, offered as a service by a local mortuary Heflebower Funeral and Cremation

Services. They themselves had a infant loss, and do this as a service to other families losing their infants.

We also got some beautiful clothes to put Leaf in after she was born. I kept thinking white and light browns for her... The white outfit would be for the Now I Lay Me Down to Sleep pictures we took as a family after she was born.

Journal entry


Well, we’re still pregnant. We’re 34 weeks, and Leaf is still in there kicking away. We eagerly await our weekly Tuesday OB visits as a chance to see Leaf on the ultrasound screen and feel like we’re just all hanging out…without the anxiety of the unknown when she is born. It kinda feels like cheating to see her so often. Tomorrow Cord will come with us to our prenatal appointment and then will meet with a

“child life specialist” (someone that’ll help him familiarize him with the hospital, and this situation). She has a book, “We were expecting a baby, but got an angel instead” that sounds precious. I’m eager to introduce Cord to the idea of angels.

I was having some me-time yesterday & had the most comforting thought. If/when Leaf leaves us to go to heaven, we have quite a bit of family up there to love on her. I just picture her being lovingly embraced by my dad…my mom’s mom… Brian’s cousin… Brian’s baby cousin…his dad’s dad, and many other precious friends of the family that have left us to go be with Jesus. Of course she will find comfort in the arms of Jesus, but there’s something comforting about knowing she has family up there too, since we can’t be with her yet. You'd never leave a newborn with anyone, but in this situation, you have to leave her... to a place you've never been to yourself.

I feel so out of place navigating bumps in the road (body/pregnancy aches, spikes in blood pressure, emotional roller coaster, etc) without my gentle amazing chiropractor in Pagosa and my amazing natural physician, Oscar, (naturopath & homeopath) and my midwife, whom have all walked me/us through time before and during both pregnancies. I was feeling so lost without them, but have had time and mental space to search out similar resources. I was able to see a chiropractor similar to the one in Pagosa, and what an amazing difference that made! I was uncomfortable walking around (amongst other things), and although I’m still feeling pregnant, I can walk around with much more ease. Oscar lined me out on the nutritional end of things, and now feel much more comfortable with my health. The OB doctors have a very important role, and I’m super happy they are specialists in what they do, and are comfortable with this sort of situation. We’re staying up here because they have so much experience with special circumstances like this. Babies & death/living problems are not a typical comfortable place for people/nurses to navigate, nor is dealing with a mom with severe excess fluid (polyhydramnios) for many many weeks (leaving concern for uterus problems/too much bleeding). Here they are very comfortable with all of this. The nurses are used to calling the amazing volunteer photographers that come take pictures of your stillborn. They know to take especially precious care of your birth plan since you are in such a rare and delicate situation. And then the going gets a little crazy, they are on their game."

Next up...

The day we went into labor, the ups and downs of navigating a hospital birth when our hearts are to be in our home for birth, and the way it all came together beautifully...

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