Danielle General Updates I don't know where else to put this Juniper

Something different

Hello all. It’s Danielle here and I’ll probably be talking about very different things than Michael. If you followed our Caring Bridge blog, you know I talked about tough stuff. I’ll probably keep talking about tough stuff; it’s just the kind of person I am.

Pregnancy does crazy stuff to the brain and I already live with bipolar I. Things get crazier when a blue baby is pulled out of you. I didn’t get the skin to skin time. No one cut the umbilical cord. No one got to touch her or welcome her to her new life. She didn’t cry. She didn’t do anything for 15 minutes until the doctors revived her. My brain didn’t even register her as my baby. I didn’t believe it. I had just seen her monitors. She was good then. Healthy. Vivacious. Kicking and moving with a heartbeat. I’d seen her earlier that day on a sonogram. Nothing was wrong. Nothing.

Then everything was wrong.

Since then, we’ve been in the hospital 3 or 4 times, all for stays of multiple weeks. She’s lived longer in the hospital than at home. She had her first birthday in a hospital room, big thanks to Aunt Mimi and Aunt Lisa. I didn’t have the energy or presence of mind to do it. It surely would have been a disappointment. But! It was super fun and beautiful and we all had a nice time via Zoom. Love in the time of quarantine.

In case you don’t know me very well, I’m not snuggly. I don’t like it. I like to pace (I usually log between 4 and 6 miles on my pedometer every day) and snuggling makes me feel tied down. I wasn’t really exposed to small children until I had my own. Let me tell you, babies need snuggling. I’m struggling with this because Juniper is generally attached to some machine or other and it makes it difficult to move her around. I can’t pace. Most parents can just carry the baby around with them as they go about their day. For me, it’s getting the baby out without messing up a cord or cable, sitting for a few minutes, not knowing what to say or do with this darling baby who’s just waiting for me to say something, but I have no words. Then I feel like I need to pace, so I get her back in her crib, cords and cables and such, and just walk in circles around my apartment for 20 minutes.

I worry that she loves me less than most other people. I worry that I’ll be the “bad cop” parent. I worry that she will want to be with her grandparents more than me. I worry that I’ll be dead last on her radar.

She’s not big enough to explain all this to. “Juniper, I want to be the best mother, I just don’t know how. I’m trying to figure it out, but it seems to come up way short of how I intended. Once I figure out how, I’m going to do the best I can. I’m going to find some people who will take better care of you.”

All I’m good at is researching. I promise you, Juniper, that I will find some place to help make you whole again.

I’m not sure if this is still post-partum depression or the medication adjustments being made for bipolar, but I feel like shit.

At home, I was the care giver. I changed the food bags, straightened the cannula, fixed the mask, gave baths, charged oxygen tanks, etc.. That was my way of showing love. With her in the hospital, that’s all been taken from me. Now she just knows me as the person who shows up for a few minutes, says hi, then goes walking around the hospital. That’s how she’s known me for the past 2 months or however long we’ve been in this godforsaken place.

I don’t really know how to end this. Michael’s posts are far more uplifting. I’m the pessimist in this family. But for now, I can’t help but feel alone and sad. I have to have faith (also difficult for me) that things will get better. They have to.

I love you, Juniper. I just haven’t figured out how to overcome my quirks to make it feel like it.

General Updates I don't know where else to put this Medical Updates

President & CEO of Kennedy Krieger Reached Out

In addition to the fore-channels and process of attempting to get Juniper Jude transferred to Kennedy Krieger, someone suggested I email various people and share Juniper’s story with them. One of those suggested was the CEO and President of Kennedy Krieger, Brad Schlaggar. I was surprised and touched that he took the time to write back, given that his role undoubtedly incredibly highly demanding and his time is finite and valuable.

So, a big thanks to Dr. Schlaggar for taking some time to read about Juniper Jude and respond to my email. It means a lot to us.

I don't know where else to put this Medical Updates

Why Kennedy Krieger & Juniper Jude?

As many of you know, we’ve been trying to change the momentum of Juniper’s care for the majority of her life. (Read about her first few months here) She was born 07/17/2019 in a botched induction and emergency C-Section that lead to a hypoxic event that altered her life forever, before she ever had a chance.

Juniper in the NICU
Juniper in the NICU

We started at Rocky Mountain Children’s Hospital & at 1 month old, we transferred to Children’s Hospital Colorado thinking we were giving her a better shot. We could not have been more wrong. We could go into the major problems that we’ve had here, but rather than dive into that endless pit of despair, we want to focus on goals & what we believe KK can offer Juniper.

Juniper is a unique kid. Of course, all kids are unique, but as a result of her injury, she has complex problems that range from stomach issues, tense muscles (referred to as high muscle tone), breathing issues and of course, dysphagia, which is the inability to swallow or take food/liquid by mouth. The thing that makes this especially tricky is that even though we’re able to get her food through a GJ-Tube, she has oral and lung secretions that she can’t manage. It’s a very complex issue and based on what we’ve learned, GI issues complicate swallowing issues.

At Children’s Hospital CO, their approach, starting at day one, was to focus on supportive care, while putting band-aids (a whole host of medications) to help treat symptomatically. Part of the reason they’ve done this is because they simply don’t see enough HIE (Hypoxic Ischemic Encephalopathy) children to understand her. Another reason is hospital protocol. But at the end of the day, it boils down to one thing: they treat her as a text book case, when it’s impossible to write a text book on kids like Juniper Jude, because they are all so incredibly different.

Kennedy Krieger is an intensive, inpatient, rehab facility. They assess and view Juniper as the completely unique person that she is. They work to help improve functions and retrain the brain to do things it’s forgotten as a result of the injury. This is the difference between Juniper having independence, such as being able to breath without a respirator, being able to eat on her own OR (if we go the Children’s Hospital Colorado route), having her confined to a wheel chair, with a tube in her throat and being treated like a vegetable. She has too much potential, fights too hard, and we cannot let the latter happen.

What you’re seeing above is a kid in pre-crawl positioning. One afternoon, she spent 10 minutes trying to coordinate her legs and arms, while holding up her head. She has determination, the likes of which I didn’t know existed. She tries SO hard. She did eventually crawl, on 2 occasions, while we were doing tele-health PT with her therapist, Jan. All therapies were slowed, discontinued or regressed since being brought back to Children’s Hospital Colorado. She is now regressing and the medical team here has made it clear, unless we do what they say, they won’t “help” us.

I know this sounds like harsh language, but this isn’t an exaggeration. Up until 2 weeks ago, when a nurse mistakenly got Atropine in her eye, resulting in a CT scan, the first since she was 4 days old. They assumed that she had little or no cognitive function, that she would never be able to learn to walk, crawl, talk, eat, swallow. This, despite the fact that we have video and photos of her doing or attempting to do these things. Despite the fact that she learned stretches by simply watching her Mom do them, at 8 months of age. Despite the fact that a NP here has seen her swallow. Despite the fact that she’s had PT/OT/ST since her first release from the NICU. Despite the fact that we have private therapists that can confirm the progress she while made at home. See some of other “she’ll never” accomplishments here.

Danielle and I have begged, pleaded, done everything we know how to do, to try and get her the proper therapies at Children’s Colorado. And yet, they have refused and at times LAUGHED AT US for daring to view our only daughter as more than a pulmonary case. CHCO is the wrong place for her, with the wrong people, using the wrong approach.

KK is unique, they have a program designed specifically for HIE children. However, they are the best in the world, and as with most of the best things, it makes them highly desired which means limited bed space in their facility. COVID-19 complicates this, increasing wait times.

Unfortunately, Juniper Jude doesn’t have the luxury of time. We are currently unable to leave CHCO, unable to transfer to another facility and it gets more complicated because the doctors at this hosptial are insisting we let them give her a tracheotomy. There are multiple problems with this approach. It could harm other progress that Juniper has made, but the biggest issue is that it creates an immediate disqualification from rehab programs, including KK.

Time is running out. The tactics that CHCO use to coerce us into treatment plans we know are wrong are becoming increasing aggressive, backing us, as parents, into a corner. We’ve got to get our little baby bee to KK soon.

So this is a Hail Mary in the last seconds of the 4th quarter. Because bed space is limited at KK, we need a miracle. We need the folks there to recognize that this is a life or death situation for Juniper Jude and we need them to help us transfer her out of CHCO, before it’s too late.

We’re asking anyone and everyone with a connection to KK to send a text to their friend, talk to their supervisor, mention it in the next meeting, call their high school buddy. We’ve had some positive results by reaching out to their staff, but we need more help. You can contact us by FB messenger, email, or phone. I will answer you 24/7, if you can help Juniper Jude.

If you don’t have a connection to KK, there are some simple requests we ask of you. Click the share button below, tweet a link to our blog or FB page, ask your FB friends if they know anyone.

This is a long shot, but we're still looking for miracles, I suppose. Anyone know anyone at Kennedy-Krieger? Juniper…

Posted by Michel Danger Wst on Tuesday, July 21, 2020

We know it’s a long shot, we know we could still be turned down, but we love our baby bee more than life itself. We have to try. She’s been fighting since her first breath & heart beat, and now, we have to fight for her.



General Updates

Juniper Jude Yoga

This is one of my favorite videos. She’s mimicking Danielle, doing stretches. She does this for almost 10 minutes.

General Updates

Juniper’s First Crawling Efforts

This is Juniper’s first real attempts to crawl. We were focusing on getting into crawling position, primarily. As we continued to work on it, she’s gotten better and even has done some crawling, with the help of her OT, Jan.

We have another video of her actually crawling, I’ll post it when I find it.