Ep. 71 - Lily's Little Lungs: A Mother's Mission to Support Other Families

October 17, 2019

Ep. 71 - Lily's Little Lungs: A Mother's Mission to Support Other Families

Welcome to episode #71 of the Mount Motherhood Podcast.

In today’s episode, we chat with Jessica. Jessica discusses navigating infertility treatments, PCOS, becoming pregnant with twins, child loss, giving birth to a 24 weeker, a NICU journey and staying organized at home with a beautiful, strong-willed one-year-old.  

This episode is nothing short of resourceful and uplifting for families navigating a similar journey. Jessica offers herself as a point of contact to any family looking to connect or looking for advice on anything medical or emotionally related to a NICU stay or medically fragile child. 

You can reach out to Jessica and follow Lily's journey on Instagram.

Resources Mentioned/Recommend in this episode:

- Look into your state's early intervention program.

- Look for your states equivalent to a medically fragile technology dependent waiver. This program helps with medical bills and energy costs. 

Mama Tip:

"One day you'll tell your story of how you overcome what you're going through now and it will be part of someone else's survival guide." So that has been my like, mantra. We have been through...we've been to hell and back. And there are other... So many other families that are in the exact same situation that we are. And if I can reach one other person, give hope to one other family from the tiniest way to set up supply in their house to like full-on emotional support like that is...has become one of my life's missions because I felt so alone and Pat felt so alone. We both did. And to know that there are other people out there who are going through the exact same thing has really kept us going and kept us motivated to help Lily, to help ourselves, to just kind of make the best of the situation that we've been we've been handed.

You can find a full transcript below.

Be sure to subscribe and leave a review on Apple Podcasts or Spotify


Host - Ivan[00:00:08]Welcome to the Mount Motherhood podcast. Thanks for tuning into another show. And just a reminder to take a moment, leave a review and subscribe so we can reach more listeners around the world.

Host - Ivan[00:00:20]Welcome to this show Jessica, can you start off by introducing us to your family?

Guest - Jessica[00:00:24]Sure. So my husband Pat and I have twin daughters. Our baby 'A' was stillborn and our daughter Lily, our surviving twin was born at 24 weeks and three days gestation.

Host - Ivan[00:00:41]And to backtrack a bit. Can you walk us through your pregnancy and leading up to the birth?

Guest - Jessica[00:00:47]For sure. So we underwent fertility treatments for a while. I have Polycystic Ovarian Syndrome. And so we had to use a combination of several different medications and some time in order to kind of figure out exactly the perfect cocktail and get things moving. So it took us a little while. But in March of 2018, I figured I found out I was pregnant.

Guest - Jessica[00:01:23]And then a couple weeks later, I went in for an ultrasound. We were being monitored pretty closely because of reproductive endocrinology and found out we were having twins. And both girls at that point were, you know, strong, steady heartbeats.

Guest - Jessica[00:01:44]But Lilly's sac was actually measuring kind of small. So we were told at that point, kind of, well, you know, don't tell anybody yet. I just kind of wait and see. Sometimes this can be like vanishing twin. But, you know, we'll recheck you every few weeks and see how things are going. And until about 20 weeks, things progressed really well.

Guest - Jessica[00:02:06]And that our at our anatomy scan. We we learned that both girls were measuring very small around the 10th percentile and Pat and I are both pretty big people. He's like 6'4, and I'm 5'10. Like we are....there is no shortage of like size in our families. So we were not expecting tiny little babies. But we went back to meet with maternal-fetal medicine the next week for a deeper and more in-depth scan. And both girls were diagnosed with IDR, which is intrauterine growth restriction. So the...their umbilical cords were not receiving enough blood. The flow from me to them was intermittent. And so the way it was explained to us that when they see this, typically, it progresses to absent. So like no flow. And then it gets dangerous when it reverses. So like, blood literally just leaves their bodies and comes back into mine.

Guest - Jessica[00:03:23]So we were told based on how far along they were in gestation, that we had a 50/50 shot of either baby making it to viability. So I went back weekly for that Doppler cord study just to make sure that the blood flow remained intermittent. And at twenty-four no. Twenty in the twenty-third week, I was admitted for high blood pressure. So I started to have kind of comorbid preeclampsia, which we kind of expected. I had had high blood pressure on and off all through my pregnancy and my mom had preeclampsia, something that ran in my family. So I was in... I was admitted, monitored. And because the girls weren't viable, they didn't feel that it was necessary to admit me. In retrospect, I should have pushed to have been admitted. Obviously can't change the past. But I always kind of wonder what happened if I had just said you need to keep me. So I was released and then a few days later went in for that Doppler study and we found out that Baby 'A' had passed the blood flow at some point completely stopped and reversed in those few days. So we lost her and I was admitted and we received steroid shots, magnesium drip for five days and we just kind of sat and waited until Lilly was ready to be born. So that was on Wednesday and I had a scheduled C-section on Saturday. We had made a plan. And in the to determine at what point we would intervene if she went into distress.

Guest - Jessica[00:05:14]So I was being monitored those five days. So just watch and make sure that she was OK. And thankfully, she was super strong and her heartbeat was incredible. And we just kind of sat there and hoped and prayed and wished. And on Saturday morning, she was born. She was 504 grams. We were told when I was admitted those few days before that she would need to be about 500 grams for the intubation tube to fit down her throat. They would try their best, but they couldn't guarantee anything. And...they had given us about a 5 percent chance that she would be large enough to intubate. And she did. She came out at five hundred and four grams. She was intubated easily. And that kind of began our NICU journey.

Host - Ivan[00:06:04]During all these...all these tests and ups and downs, what resources did you rely on to sort of backup any medical terminology or things that were being thrown your way? How did you make yourself feel more comfortable in making these decisions?

Guest - Jessica[00:06:23]I did a lot of, a lot of, a lot of research. I was a school social worker at the time, so it was the middle of summer. I wasn't working. So I had a lot of time to do a lot of reading on my own.

Guest - Jessica[00:06:39]Reached out to some friends and family who are physicians, and I became pretty close with one of them, maternal-fetal medicine specialists that we worked with. So she was kind of my sounding board for, you know, hey, should I be eating more protein? How much water should I be drinking? Are you sure this is OK?

Guest - Jessica[00:06:59]So I you know, I kind of had a nice little team at that point in my corner, but ultimately there was really nothing that I could do to change things, it was going to happen regardless. So, yeah, I mean, I've always kind of armed myself with research as a coping strategy. So this was definitely no exception.

Host - Ivan[00:07:23]And during the first few weeks of Lily's life. Can you walk us through that part of the journey and all the hurdles that she had to clear through that time frame?

Guest - Jessica[00:07:38]For sure. So she was obviously super small and she made it through what they call like the 'honeymoon period'. The first 72 hours. Things were fabulous and she was super strong. And they were really not very many issues that we had faced except for the fact that she was not pooping. So typically they would say within the first few days that her bowel should wake up and she should start moving milk through. And she wasn't. And that continued and continued. And she was getting tiny little enemas. And like all these little interventions that they could do to try to try to get her to go. And she wasn't. And her stomach was descending further and further. And we had contrast studies done and X-rays done every day. And nobody could really figure out what was going on because the x rays, while they showed distended intestines, didn't really show like a perforation or anything that would explain what was going on. So right around a month old, she was a pound and change, probably a pound and a half. She went into exploratory bowel surgery to determine what was going on. And we were told to say goodbye to her that babies often don't survive surgeries that early. And we did. And it was awful. But our surgeon is absolutely incredible and has performed other surgeries on her since. And she coded during surgery. They had to bring her back to life, but she made it. And she came out with a little ostomy. They pulled her intestine through her stomach because they did find a perforation. So they needed the rest, the lower intestines to rest. So they gave her a Jujuostomy so right at the top of where her intestines meet her stomach was an ostomy for 5 months.

Guest - Jessica[00:09:51]So that kind of kicked us off pretty intensely. And as a result of of that surgery and prolonged intubation, her lungs took out a really big hit. And she was on all sorts of different ventilators and some high-frequency oscillating ventilators, which were really scary.

Guest - Jessica[00:10:14]Like we couldn't hold her. We had to...she had to be like super sedated so that it could work to keep her lungs open. And so that surgery, September 12th, which is coming up, kind of kicked off the rest of our long NICU journey.

Host - Ivan[00:10:32]And to fast forward to now. Can you share a bit about Lily's personality and sort of what you know for those of us that don't know her? You know, how would you describe her?

Guest - Jessica[00:10:49]Sure. So I think because she's been through so much. She is super strong willed and stubborn and wants to do things herself. We work with early intervention therapy. So she sees four therapists a week to work on developmental milestones. And she will not do hand over hands like she has to do it herself. And because of that, she's made really incredible gains. Really quickly with that, you know, strong personality comes a girl who is determined to do whatever she wants, whenever she wants. Which has its trying moments, but is absolutely incredible to see. We're just so proud of everything she puts her mind to and she has her moments where she likes to be cuddled or snuggled. But for the most part, she just she does it the way she wants to do it. And we love that about her.

Host - Ivan[00:11:48]In the blog that you wrote on the Today Parenting site, you mentioned how this whole chapter and journey has tested your marriage. I know it's something that's not really talked about too much, but can you share the ups and downs with that and sort of where you're at now?

Guest - Jessica[00:12:05]For sure. Yeah. So, I mean, Pat and I have been together for our entire lives. We've known each other, grew up together, known each other since middle school and got married, dated all through college, got married. And you know that every relationship has its ups and downs and, you know, walking into it that things are gonna be difficult. But obviously, like, we could have never predicted this. This is like the most extreme situation that anyone I know has faced.

Guest - Jessica[00:12:43]So the biggest thing for us has been from day one, just to communicate whether we are frustrated, sad, scared, we're able to kind of hold each other up. And he's always kind of the rational, level headed thinker. And I'm definitely more of the emotional kind of fly by the seat of your pants in the relationship. And we really balance each other out. And in this this experience especially, we're able to kind of see both sides of things and work together to either investigate more or fix something or, you know, do whatever we need to do. I think I couldn't have picked a better partner. And as long as we continue to communicate. I have no doubt that we will continue to face this together.

Host - Ivan[00:13:40]What other, I guess, therapies or resources do you take advantage now to help Lilly or yourself? Just anything that's been that you want to maybe mention or give a shout out for other parents who are on the lookout.

Guest - Jessica[00:13:56]Yeah. So we definitely take advantage of our state's early intervention program. So we receive free therapies; developmental, physical, occupational and speech. And then well actually, we're also starting diet or nutrition therapy as well.

Guest - Jessica[00:14:17]And those are provided through the government to help to kind of bridge the gap between Lily's, where she is now developmentally and where she should be based on like her typical peers.

Guest - Jessica[00:14:31]So we...we definitely utilize all of those therapies. We also because Lilly has a trach. We are part of the medically fragile technology dependent waiver in our state. So we know that that's called something different in every state. But definitely, if your child is heading down the road for a trach, that program has helped us with medical bills, energy costs, because it costs an insane amount to keep her home and her ventilator and concentrator and everything running. There are associated programs that help us with our insurance premiums and all sorts of different kinds of small associated programs. But definitely, no matter where you are in the US, there is something in some capacity that will help. So those have been incredible programs to kind of help us be able to keep her home. And then I see a therapist as a result of all of this. I have some pretty significant anxiety and I see a therapist every week. And there's also a bereaved mothers group in my town.

Guest - Jessica[00:15:52]And that is something that I think has been really beneficial to connect locally with other parents who have lost children. But then also Instagram has become my like outlet because there aren't a lot of other trach parents or medically fragile parents in my town. And our situation is inherently isolating because we can't really take Lily out or have her around other kids. So to be able to connect with other families, other parents going through the exact same thing on the internet has been absolutely incredible. So shout out to all of my Instagram friends, because they have gotten us through the majority of these days where I don't think I can do it alone.

Host - Ivan[00:16:43]And on those days where, you know, things aren't going well or you're feeling anxious, what is something maybe a quote or just something you remind yourself of that pushes you through those?

Guest - Jessica[00:16:55]So somebody sent me a quote a couple weeks ago and it was like, perfect. I don't know if I can see if I can find it. OK. "One day you'll tell your story of how you overcome what you're going through now and it will be part of someone else's survival guide." So that has been my like, mantra. We have been through...we've been to hell and back. And there are other... So many other families that are in the exact same situation that we are. And if I can reach one other person, give hope to one other family from the tiniest way to set up supply in their house to like full-on emotional support like that is...has become one of my life's missions because I felt so alone and Pat felt so alone. We both did.

Guest - Jessica[00:17:53]And to know that there are other people out there who are going through the exact same thing has really kept us going and kept us motivated to help Lily, to help ourselves, to just kind of make the best of the situation that we've been we've been handed.

Host - Ivan[00:18:13]That was an incredibly powerful response, and one thing that I want to mention on your Instagram page, which is at Lily's Little lungs, is the Instagram story highlight in terms of trach info. Now that we have you here, are there maybe two or three tips that you would have for parents?

Guest - Jessica[00:18:32]Yeah, definitely. I would say we are huge proponents of organization. It makes our day smooth, run super smoothly. So there are a million different ways to organize all your things. But just the amount of crap that we accumulate from our medical supplier and from nursing and everything that comes in, paperwork that comes through the door like the biggest thing that you can do is remain organized. So I've created binders for kind of all facets of Lily's life. There's a binder for medical paperwork. There's a binder for developmental evaluations and therapies. There's one for nursing. There's one for our equipment supplier. We try to keep everything as organized as possible. Every supply has a place that way our home doesn't feel like an ICU. And when I do need something urgently or quickly or I have to reference something on the phone with my medical supplier for the hundredth time, we know exactly where it is. It's exactly where it's supposed to be. And we're able to kind of get it quickly because the last thing I want to do is either sit on the phone all day or fumble to find something when I need it. So that's been really helpful.

Host - Ivan[00:19:58]And one of our favorite questions is if you can describe your husband, Patrick's superpower, and then if we had him on the show, what would he tell us your superpower is?

Guest - Jessica[00:20:11]So in the NICU, you know, several of our nurses used to call him the Rock of Gibraltar because that man, like, can stand there and whether the scariest of things...Lily used to have eye exams done where they will literally like pry open her eye sockets and she would scream and everyone would scream. But Pat would stand there holding her hands and just like calming her down. And like not...he was not fazed at all. And like, I was running from the room literally screaming, his superpower is like incredible, intense calmness. And it has helped not just me and not just Lily but like medical staff. And we're just so thankful that he can be like the calm to often my storm... and then me. God, I don't know. Probably the same like, but like opposite. That I have been able to find a little bit of the joy in some of this terrible situation because we have this incredible kid who is doing things that we were told would never, ever, ever happen.

Guest - Jessica[00:21:31]She's kicking ass. And where I'm able to kind of celebrate that every day, despite the tubes and wires and beeps and things that are happening in this house. Just staying positive and knowing that things continue to get better every day.

Host - Ivan[00:21:50]Well, that wraps up my questions. But do you want to take a moment to share any other last-minute advice with the listeners?

Guest - Jessica[00:22:00]I mean, I would say for birth parents still in the NICU, whether it's two days or 200 days, you will get through it. It is not easy. It is not fun. Not being able to bond with your baby or experiencing pregnancy and childbirth in the way that you expected it, it is, is traumatic and it's awful.

Guest - Jessica[00:22:23]But you will get through it and get help. Ask for help. There is a community of people out there who have done it and are willing to open and embrace you with open arms and then medical parents, trach parents. Same thing.

Guest - Jessica[00:22:43]We are here. There's an amazing community out there of people who want nothing more than to help and to offer any sort of advice, any sort of love and community that we can. They've embraced me wholeheartedly and I'm really excited to do the same.

Host - Ivan[00:23:07]Well, thank you so much, Jessica, for taking the time today. And for all of our listeners, you can follow Lily's journey on Instagram at Lily's Little Lungs. That's L-I-L-Y-S and you can message Jessica there with words of encouragement or any questions beyond what we've already talked about. But thanks again, Jessica, for joining us today.

Guest - Jessica[00:23:26]Thank you so much.