General Updates

Juniper Jude (Reddit Response/Copy Pasta)

(So- I updated a post on Reddit and since it gives most of the details about what’s new, I just cmd v/p’d it here. More details and photos to come, when it’s no longer One AM.)

We’re updating the blog as much as we can (, but I thought I’d drop in and say thanks to those that reached out on Juniper’s behalf.

We got a sort of bitter-sweet (and somehwhat confusing) response from KK. The good parts first: her file made it to the medical director, was reviewed, she reached out to Juniper’s chief pulmonologist for guidance and more detail on Juniper’s state. The fact that the medical direct reached out personally is encouraging. She was given very serious consideration.

The medical director’s response, as it has been translated to us, was that Juniper WOULD be an excellent candidate for KK’s program.

Now for the mixed bag of news. Her chief pulmonologist is a fantastic doctor named Dr. Debord (i think that’s how you spell it.) Dr. D advised KK’s medical director that she didn’t believe Juniper’s breathing was strong enough to sustain 2-3 hours (or more) of physical therapy.

We were advised (again, grrrrr) by Dr. Debord and the folks at Children’s Hospital Colorado that they recommend a tracheostomy. We were initially told by a sneaky nurse practitioner named Anna that, “Juniper will be accepted, if you do the trach, when do you want to schedule.” After getting clarification, the actual response was, “we will consider her, again, if you choose to do the surgery and once she’s gained some pulmonary strength.” After a lot of prying, CHoC acknowledged that the medical director of KK wasn’t the person recommending that surgery, it was, again, CHoC.

The fact that they would consider taking her with a tracheostomy is a pretty big deal. They have very few spots (so we’re told) for kids with those types of respiratory needs. But, even if they accept her (after the surgery, after months of recovery and hopefully improved breathing) she would then go on a wait list and without actually saying it could take 6mo to a year to get in, they said 6-1yr.

Another option was to request a 2nd opinion from John’s Hopkins pulmonary team, which is something the KK intake director suggested we do. And while this is something we want to do, we want to do this after we’ve gained some ground with airway clearance.

So, we made a decision to not get that surgery right now. Instead, we’re opting to ligate 2 of Juniper’s salivary glands (she has over 40, so it’s not the end of saliva, just a way to help manage secretions without a tracheostomy), in an effort to support her breathing that way.

The rationale is:

1) this won’t have serious long term consequences. It’s a relatively common surgery, both in children like Juniper and other’s that have swallowing disorders (think stroke, brain damage from car wreck, etc). We’ll know relatively quickly after the surgery how it improves her airway and we can always go to the tracheostomy if she’s still having problems.

2) We don’t believe a tracheostomy is a good choice for Juniper and we want to avoid it unless it’s the only way to keep her safe. We’re currently managing respiratory with 24/7 bipap/avaps (vent).

3) **most importantly, if we are able to get her sufficient airway clearance with salivary ligation, get an “OK” from her pulm team for rehab, the wait list is much much shorter at KK. And we’ll know in relatively short order if this is going to be affective or if we need to try something else.

So, the salivary ligation surgery is set for early September. In the mean time, we’re at home and Juniper is doing very well with her regiment. It’s a little demanding (q4 treatments, round the clock), but neither Juniper, nor her mom (danielle), nor I mind the extra effort. She’s much happier at home and tbh, we do a better job supporting her here.

Again, thanks to anyone that reached out on Juniper’s behalf. I can’t tell you how overwhelmed I am by the support we’ve received. I would love to thank each and everyone of you in person some day, regardless of outcome, but hopefully with Juniper walking along side of us.

I mentioned the blog, but we also started a FB page for updates, and would love to have anyone interested in following progress to follow. But also, i know there are other parents out there going through similar things and Danielle and I always enjoy talking to and listening to those in a similar situation, so please feel free to reach out, even if it’s just to say, “hi.”

All the best and hopefully we’ll have another update soon, with more decisively good news.

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.

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.

General Updates

Welcome Back

This is the beginning of the beginning for a the new improved Juniper Jude, now with updates and blogging. I apologize for taking so long to set this up. Sometimes the internet doesn’t cooperate with me, and setting up this blog, which is essentially clicking 2 buttons, for some reason was much, much harder than it should have been. But, alas, here we are- the default WP theme, with absolutely no bells and whistles. But I think the important thing here is that it’s up and running, which brings me to the theme of this post, “keep trying shit and something will work, probably, maybe.”

Juniper is now 9 months old. To recap, Drs gave her 2 days tops, then 2 weeks, then quit giving times, then started giving time lines again, then stopped again. But here she is, cooing, making raspberry sounds, fussing, sometimes fighting with us. Sometimes fighting with her friends- stuffed animals, that get flung across her crib, onto the floor. It’s amazing what our little creature is turning into: a real human baby. Her personality has grown so much. Since we’ve missed a lot of time, I’ll list out some of her likes and dislikes:

She Likes and/or Loves

  • She loves snuggles
  • Hand holding
  • The Beatles
  • Strange sensory youtube videos with theme park style children’s songs
  • Dancing with Danielle or myself
  • Air drumming (with some assistance)
  • Her pacifier and/or my pinkie dipped in strawberry milkshake
  • Her Mom, and specifically snuggling her Mom’s boobs and/or shoulder
  • Her swing (most of the time)
  • Clean clothes/diaper/bedding
  • Funny faces
  • Giggling just before bedtime
  • “Me time” – I kid you not, sometimes, she just wants to chill in her crib, alone. She’s had enough, she doesn’t want to be held. Usually short lived, but definitely real.
  • Songs that incorporate her name and/or her friends (stuffed animals) names.
  • Tart flavors. Ok, so she tried “Electrolyte” grape flavor, which is Pedialite for adults. She made the most horrible face and immediately puked. You may ask yourself, “why would he say she likes this?” Well, the 2nd taste, she made a face and didn’t puke. The third taste she made the most inquisitive face, and it got tastebudwheels turning. I chalk this up as a win.

Things That She Hates/Dislikes

  • Drs.
  • Bright lights in her face
  • Country music. I made this up, but God help us if she likes that shit, save the classics
  • Change. Any change really. She complains for a moment, then gets over it.
  • Nose suction. She tolerates mouth suction much better
  • Being told she can’t/will never/won’t
  • Quitters

My favorite thing about Juniper is her determination. Stubbornness? I suppose, but really they are 1 in the same. From her very first breath, she’s fought. She doesn’t give up. She works hard at something every day. Today, she’s trying a new-old formula. It’s a challenge, but she’ll step up and give it her best shot. Tomorrow, there will be another and she’s up to it.

Since our last post, Juniper has been in the hospital twice and back home twice, where she currently resides. We’re trying a host of new medicines, some that help, some that don’t and some that we’re not sure about yet. I’ve yelled at a number of Drs., nurses and other medical care professionals for their inability to properly treat things, tell her, “she can’t” or “she won’t” and otherwise incompetences.

Breathing is a challenge for her sometimes due to the secretions that she isn’t quite swallowing yet. Depending which of her 26 doctors you ask, it may get better, it may not, it will get worse, there’s no hope, there is hope, there’s a crystal ball, there’s a paper, there’s 14 years of post grad work at some prestigious Uni that says otherwise. if you’re not confused, re-read that, because you should be.

Here’s a video of Juniper making faces at me/mimicking me, the beginnings of communication (another thing she’s not supposed to be able to do):

Oh yes, the theme.

Ok, – signing off. I’m sorry this post was such a mess. I’ll do better in the future and hopefully Danielle will help, too.