#365 - 👶 Christina’s Journey to Discharge Day

Hello friends 👋

In this heartfelt episode of Beyond the Beeps, Leah and Christina discuss the emotional journey of navigating the NICU as a parent. Christina shares her experiences from the moment she went into preterm labor to the discharge day of her son, Caleb. The conversation highlights the importance of building a support system, advocating for your child, and finding resilience during challenging times. Christina emphasizes the need for information and education in the NICU environment, as well as the significance of self-care for parents. The episode concludes with a message of hope and encouragement for families facing similar journeys.

Link to episode on youtube: https://youtu.be/ZhCIvLTaM7Y

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The transcript of today's episode can be found below 👇

[00:00:00.000] - Leah

Welcome, everyone, back to Beyond the Beeps. This is an extraordinarily special episode because I am joined here by Ms. Christina Matthew, and we are in a different location. If you're watching us on YouTube, you're probably listening. We sound a little different. It's because we're joining you from an actual NICU. Today is a very special day for Christina and her son, Caleb, as today is Discharge Day. We never get a chance to talk with parents when they're literally about to leave and discharge is so on your top of mind. I wanted to bring you in, particularly now, to talk a little bit about discharge, but I've been very fortunate to know you and Caleb and Modeste and Chloe and Christian in the family now for, oh, gosh, how many? Four months. Four months, right. There's something very, very special about you and your family in many ways. But one thing that really rings true from start to finish is your faith. I wanted to give our world out there, our Beyond the Beeps community, the incubator folks, also an opportunity to meet you and to hear from you because I think you have a very powerful impact on us and Will for the World, too.

So welcome to Beyond Beeps Christine Matthew.

[00:01:26.600] - Christina

Thank you so much. Thank you. It's truly It's an honor to be here, especially at the end of our NICU journey on this charge day. To the whole Beyond Beeps community, hello, and look forward to chatting with you. Thank you, Leah. Yeah.

[00:01:44.440] - Leah

Let's start with Caleb, but I know the story of Caleb doesn't necessarily get Caleb, so let's start with your NICU story.

[00:01:54.970] - Christina

Yes. I actually ended up going into preterm labor, and there was actually a watch at 24 weeks. I thought that we were going to be able to hold out. The doctor said, Hey, we want to make sure We can get to as close to about 34 weeks as possible. Let's make sure we can optimize labor and delivery. But Caleb had other plans. At 26 weeks, I actually went into labor with Caleb. That was May 26th, and that's when our NICU journey started.

[00:02:38.980] - Leah

Okay, so 26 weeks, a little guy, and he came into the world pretty heartily, though, I recall. He was pretty ready for taking us all on.

[00:02:50.000] - Christina

He's very feisty. You mentioned my journey, so I'm going to step back. I think when we first heard preterm labor as term, it was already going through my mind, my husband's mind, that, Okay, wait, it's very early, and we don't know what the outcome will be having a baby this early. Also for me, because faith is very huge and like, God, is this your plan? Although I believe God's plans are always perfect, they are not always easy to walk through. For me, it was really positioning myself and our family to be able to take this walk with faith being forward and keeping fear on the peripheral because I couldn't put it all the way behind me. That would not be true because there's so many concerns and just things that we don't know, but really saying, Okay, fear, move to the side. I cannot have you in front of me. It It took us starting the journey with a lot of prayer and with a lot of just positioning, saying, Okay, God, we trust you. We don't believe that Caleb is here. Just to be here in this moment, we're going to proclaim that he's going to come home. Not only is he going to come home, he's going to come home a healthy baby. We stood on that. Okay. The journey began.

[00:04:29.280] - Leah

You said pushed fear to the side? Was it through making that intention, proclaiming that this is what we were going to put out? Or were there other things that you did that helped you to be able to push that fear aside? While it was still there, you never ignored it. It was like, I see you fear, but not today. We're going to lead this way. What were things that you did to help?

[00:04:58.520] - Christina

The first thing is coming into the NICU environment, it was a first for me. Meaning, I don't have friends or family who I know who had a NICU experience, but have been extensive. Maybe a couple of days just to check a few things. But in terms of giving birth as early as 26 weeks and then walking the journey out, I, myself, and my husband, we were not aware of anyone, so we didn't have close proximity. Coming into the NICU is already daunting. It was number one, you come in and there's already fear of, Oh, my God, where am I? Look at the babies around. There's so much going on. Look at all the noise. Listen to all the noise. Seeing Caleb for the first time, it was definitely an experience where I was very much so like, I need to catch my breath several times. I need somebody to hold my hand and reinforce and confirm, This is your baby. You are his mother. You can touch your baby. You don't have to be hands-off. There's just a lot of things you don't know. I was like, I don't want to put him at risk for anything. I don't want to transfer anything. It really took the nurses here. There's a nurse, Himna Shirley. She had my husband and I, and she said, This is your baby. She took my husband's hand and she said, Do this to your baby. You can hold on to your finger. Grab your finger. Yes. My husband did it and it was like, Wow, that's our baby. Step by step, I think it was us looking at the people around us who have experience in the NICU to actually help us walk through the NICU experience that actually also helped us push fear to the side. Because the more that we knew, the more that we learned each day that came along, that we more information, we felt more empowered. I think the faith piece is core and central, and it also took us learning, how do we move here, what's going on? Because at the beginning, we did feel a little power, powerless. Now I feel quite powerful. Now, I could run circles in this NICU, and I feel great, but it took a lot of work.

[00:07:24.460] - Leah

Yeah, that work is something we take for granted in parenting in general, because I think it's been sold to us a lot that it's natural parenting. It comes naturally. When you're put in such an an artificial place, it's even more unnatural. Then you added that element of not wanting to bring any more harm to your baby. You've found a way to balance that. It sounds to me, you tell me this is right, you found that through your solid trust, but also looking for information, working hard at this.

[00:08:02.840] - Christina

Now, I will tell you, the information piece did not happen automatically. It took me about a good three weeks before I could feel like I had my feet on the ground in an acute. What I mean by that is, first off, it took me two days, host my son's part, for me to come into the NICU. Say more. After. I had the emergency C-section, and it was me trying to make sure that I was okay and also build up to coming into the NICU. That was a top concern of mine. My husband actually came to the NICU first.

[00:08:44.120] - Leah

You mean when it was build up your emotional bandwidth or strength?

[00:08:51.840] - Christina

I would say most of it would be with strength, mental strength, because for me as a mother, I I do feel as my child's mom, it is my responsibility to stand strong when he is weak. I wanted to make sure that I could come in and actually stand. Now, in the beginning, me coming in standing, it looked like 15 minutes. In the beginning, the first two weeks, I couldn't spend more than 15 minutes in a visit in the NICU. The pace and the information and the building up of me becoming strong and what I am today, again, it was a full-on journey. And so 15 minutes, and then as I got my bearings, as I began to feel more comfortable in the NICU, as I became more aware, and as I started to heal just physically, I began to get stronger. One of the things I have to highlight in becoming stronger is talking to the doctors and the nurses and hearing things that I never heard before. Oh, your son has a large PDA. Oh, he needs blood transfusions. All of these things that you typically hear within the world of pre-mes were not typical for us. We found receiving a whole lot of information and just figuring out, What does this mean? What do we do with that? How to slip? What do we expect next? We talked to doctors, we talked to nurses, but there's a lot of information you get. Some nights we have to go home and we have to say, we have to just breathe for a little bit and then figure out what this was. That's where the NICU, the NECU, the NECU, became at. We would sit down with it at night, my husband and I, and we'd look through it. We'd actually look through the ABCs of the NICU, we'd read, and we'd say, Okay, this is what a large PDA is. They said a PQ. Sorry. Yeah, PQ line. Oh, not as a pic line. A pic line? Mm-hmm. How does it pic line? Okay, so I love the paragraph that was in the book. Because I could read it, I could really understand what it was. It took a lot of education for us. The more we knew, that meant the next day I could come in and I could say, Okay, he has this peak finding. What is he getting through it? What do those things do? Okay, he's getting his proteins, the lipids, all these things. What does that mean? I found myself. I told my husband, I said, I'll become a medical secretary here. I mean, I have tons of notes. You see my phone now? I have notes for months now, just with all the notes on what does he have? What is he getting? What is his needs? I found myself the more information that I had and in terms of the more that I knew what was happening to him, I felt like I was becoming a member of the team. It was not just me listening to what was It was happening, but I knew it. Because I knew what was going on, I could react to it, I could respond to it, and I could be a part of the conversation about what could the possible next best steps be. I could also catch things that collaboratively would have been too early or too late.

[00:12:16.340] - Leah

Sure. Yeah.

[00:12:17.920] - Christina

For example, they say, Oh, wait. Okay, he's due for this particular treatment on this day. I could say, Actually, it's been seven days. I was told that it was going to be on this day. Are we still on track? Then they go back and say, Oh, actually? Yes, let's get back on track. I felt empowered being able to stand and already speak on behalf of my son. That is what truly gave me, I think, the fortification of my position here of his mom in the NICU. I could actively participate. It didn't happen on day one. But as soon as I could take the baby steps that I needed to take and gather my strength, I could show it fully for him. That part to me is a true success. It wasn't just me. It wasn't my husband. We have a 10-year-old daughter, Chloe, and it's been most of the summer. She was here for the summer part of us with us part of the time. She got to just be here with us. We could explain what was happening. She can actually come into the NICU, you know how that works. But it was a full family effort to make sure that we were taking care of Caleb in the way that we could, given our position as his family.

[00:13:45.860] - Leah

Yeah. I mean, today we're sitting on discharge day, and I feel that I'm sitting before a mountain, right? This regal, glowing mountain. That's you. I'm going to ask, you're the You're sitting like... There's a beautiful meditation, a mountain meditation about being still and unwavered and being able to be calm despite the storm and glow and the sunlight. I feel that I'm sitting before a mountain now. What I'm hearing that I hope other people can hear eventually is that it begins with some soil, right? In some rocks. What I'm hearing is you're talking about layering and layering and layering and layering. That's great for us to talk about and to say now, how did you manage to give yourself that grace? Because I know it's so overwhelming. How did you take those baby steps and take those baby bites and be okay when you didn't know? How does that work for someone? Because I know a lot of times we get frustrated. I don't understand it, so I'm not going to try.

[00:15:05.240] - Christina

So, I will tell you one of the key things that I needed to make sure that I didn't do was to walk this journey alone. That meant with each step that I could take, I was supported. With each step that I could not take, I was still supported. That was the benefit. When I say I did not walk alone, that meant I had my handling, and we navigated this together. It meant that I regularly checked in with the doctors and the nurses, and we made sure we understood plans and what to expect. I made sure that I held on tight to ICU baby. My parent mentor, Nicole, in seeing you here at the hospital, There's an ecosystem here. The ecosystem is what actually helps make the mountain taller. It makes the out and grow bigger. As I was here on the days where things were too hard and where I could not actively participate and not just have to receive and be overwhelmed, that was okay. I could reach out. I had people I could call, whether it was Nicole, I could touch base with you here, or I'd have my husband. They're just the ecosystem of people that are here to be able to uphold and to support. That's the first thing. Another thing is a part of that ecosystem includes the different hospital departments. Can I think of music therapy? Yes. Childlike. If we're looking at speech therapy. I'm the mom who had appointments with all of the specialists, and they would sit down with me and talk to me about, Listen, we're going to nipple today. I'm going to show you how I do this. I'm going to show you what to look for and sign to a I'm going to teach positioning. It's music therapy. I'm going to show you, how do you do the MNE therapy? How can you massage him and sing and just activate him? How can you support his development? So all of these things are mixed in with the NICU experience. It gives you a comprehensive experience, it gives you a comprehensive experience. Firstly, you have support from different angles, and you're also being trained and supported on how do you take care of Caleb. Or how I take care of Caleb. I could not fall because I wasn't alone. The mountain that you see, it's because the mountain had good soil underneath. There was grass, and everything under was pushing it up. It's that. Yes, truly that.

[00:18:14.300] - Leah

That's spectacular to see it, really. As we prepare, we just said goodbye, go home to a friend here in the NICU.

[00:18:32.010] - Christina

Yeah, I'm already crying.

[00:18:33.980] - Leah

I was like, Today, I'm already crying. I'm already crying. It's okay. We're going to do that for you soon here, thinking a little bit about that transition to home, what were some things, processes or things that has been done well to prepare you to go home?

[00:18:59.640] - Christina

So Chapter 11. Yes, I'd like to take it. I love it. Yeah, yes. Transitioning home. Some things that were done well. I would say the first thing is I was provided with information through the guidebook because the transition home and what to expect didn't come as a surprise. My family, we actually showed up saying, Hey, so Chapter 11 says that these are the things that should be happening. The car seat test, all of these things. Can we? I had my little checklist and I said, Great, let me know where we are with this. Sure. Of course, You're not going to get a specific date to go home when you first enter into chapter 11, entering home. But at least we knew what to expect. The doctor shared with us what was important for us to be able to see with Caleb and his health. We knew that ultimately he would drive when we would actually go home. But we knew what we needed to do to prepare for it because we had the written resources and we could always check with the doctors and nurses to confirm. Then Iris is as gold with discharge. I've tapped her a few times. Iris, can we talk about what's coming up?

[00:20:25.420] - Leah

Yeah, she's the discharge coordinator here at this hospital, and discharge nurse, and they are consent because they get involved early, too, right? You didn't just meet her today.

[00:20:35.000] - Christina

No. Yeah. Actually, I met her a while back and didn't know that she was the discharge nurse. Everybody kept saying, Oh, yes, you'll meet with Iris. I kept saying, The discharge was, who's that? The one time I saw her face, I was like, You're the discharge. She said, It's me. I was like, I was so happy because there was already a bond established. It was great.

[00:21:01.460] - Leah

What can be done better? What do you wish for? We can't go back and change something for you, but if we could go back and change it for somebody else, what do you think that would be?

[00:21:14.860] - Christina

I would say the biggest, I would say, shot to me is the transition that we make from the NICU A. That's the high, the high care intensity. Caleb spent a month, about a little over a month in the NICU A, and then transitioned over to NICU B. In the NICU A, you have daily contact with the doctors and fellows. You have constant information floating at you. You're very well informed. When you get to B, the sentiment is that B is better. Those things calm down a bit.

[00:21:53.180] - Leah

Okay. This is when Caleb doesn't need, maybe he's not motivated anymore. He's stepping down.

[00:21:59.440] - Christina

Exactly, stepping down. I think things can get quiet. Because I like information, I want to see informing, I want to know what the plan is for the week, I definitely take chart and say, Okay, let me follow up to see who's the doctor on call this week. What is the plan for this week? I found myself making sure that I reached out in the beginning, and whoever the doctor was, as they changed, I'd make my initial phone call and say, Hey, I'm Caleb. It's my own Christina. I definitely love for us to meet maybe twice a week or at least talk beginning of the week, end of the week, so let's evaluate, see how things have gone. During the week, I can keep up with the nurses. But I definitely want to make sure I stay on top of the plan and know how things are moving. Because even when you get to a less intensive side of the NICU, there are still moments that you don't want to miss.

[00:22:56.820] - Leah

For sure. Say more.

[00:23:01.080] - Christina

So he transitioned on high-flow. He was on one of the lowest levels or I would say most friendly machines for oxygen support. When that comes off, I want to know, what are we expecting? What do we need to look for? When is that going to happen? Because I want to make sure that day we're here, we see everything, and we welcome him to that next new stage. If we're going to actually bottle feed, I'm a huge advocate for breastfeeding, and I want to support that with my son. But I know in the NICU, we have to nipple as well to make sure he can suck, swallow, and do all the things that he used to do. When it's that first bottle, let me know when that order goes in, because I definitely want to be able to be there and just say, This is my son's first moment doing this. You can keep up with first and milestones, but you also know what the big plan is. For me, it's the NICU aid to be transitioning and how you have to be more proactive as a parent to make sure that you stay on top of what's going on with your child. For me, that's not an issue because I can do that. However, I know that not all parents can do that. Not all parents are present because of other scenarios. I think it's just as important to be able to set expectations for what NICU will look like.

[00:24:24.000] - Leah

Yeah, I think it's something that you've taught me about that. That transition feels a little cliff-like. Everybody is managing for you, and then it's great news, but we're not going to talk to you much anymore. I think I've taken that since you shared it with me and made sure that folks who aren't as comfortable advocating and stepping forward and being the driver of the engine, that we come up with a plan for them, that we help them. Okay, if you can't be there physically, because that's true and honest, is let's call every day or let's set a time. The nurses come to know that the new routine for their baby are. Because it is very important that if there's less news, it doesn't necessarily mean that you shouldn't be hearing about I think you should. There's a lot of great things happening every day. Or there are little bumps in the road, too, that if you're on top of it as a parent, you can make an impact and make a change. Certainly, like with feeding, if we get a little bump, if we're not there to catch them up and and help them through it, we can get a bigger setback from it, as you know.

[00:25:35.320] - Christina

We had a bump last week.

[00:25:36.990] - Leah

Yeah.

[00:25:38.020] - Christina

I'm actually not supposed to be here today. I am, but we were actually looking forward to bringing Caleb home last week. If you're in chapter 11, this would be called a setback. Caleb had a setback during feeding. He had a braided and a D-set. It turns out that nothing major. He has some baby reflux, which is also in chapter 11. So read the book truly, because it didn't become a surprise because I said, Oh, you know what? I read about that. I was hoping it didn't happen the day before discharge would happen. So it set us back a week. But again, better for everything to happen here in the NICU than for us to bring Caleb home and then just have to holler and scream it out and do the things that we've learned in terms of all the padding and, Oh, well, you I are going to get to. Yes. He worked it out.

[00:26:34.240] - Leah

He worked it out with your help. The book that Christine is mentioning is a book that we at ICU Baby give to our families, the MyNickey Baby book. I really appreciate that you share about the setbacks because they are so common and the end of the time in the NICU is so hard, I think, because babies look pretty typical and everything seems to be going great, and we start to lower our guard a little and relax a little bit in a way towards going home, but we're also still holding on to this like, Oh, any day, any moment. So the setbacks can be a roller coaster of your own.

[00:27:16.320] - Christina

Yes.

[00:27:17.080] - Leah

You handled it really well.

[00:27:18.320] - Christina

I did. I had to go home and take a nap that day. Okay? I got good rap. I hear.

[00:27:22.800] - Leah

Yeah.

[00:27:23.280] - Christina

Then I got up and I was like, Okay, we're going to go back and start over tomorrow.

[00:27:28.600] - Leah

See, I love hearing you say that, Christina, because what you did there was you tended to yourself. It's very hard to do. There isn't much space. I was talking with our mentor team earlier, and we were talking about this even in just general life. Tending to yourself is really hard. You taking that short nap, I'm sure you didn't sleep for nine hours. That short nap allowed you to come back, allowed you to go, Okay, reset. I'm going to come back fresh, showing up the way I want to show on for Caleb. I commend your courage and your care. I mean, it's great love. It's how you care for Caleb even better is to feel better yourself.

[00:28:16.880] - Christina

Yes. I learned that through one of the Nes videos. The self-care video.

[00:28:25.200] - Leah

Okay.

[00:28:26.320] - Christina

I'm like, Yes, I can do things for myself that help. So to support me to show up here for Caleb. That's important. The nap was four hours.

[00:28:36.060] - Leah

Yes, four hours. That is a restorative nap. I love to hear that.

[00:28:41.830] - Christina

That is good. Yes, it was a good one.

[00:28:46.350] - Leah

You needed it.

[00:28:47.150] - Christina

I did. The next morning, I came back and I said, Hello, everyone. Another week. Let's see how this goes.

[00:28:55.960] - Leah

Yeah, There's something in this discharge phase that I want to remind you of, I guess, and a lot of our families is, you've made it to this day. Taking a moment, there's a lot of things to look back on. But if we just choose one thread of the millions of things that have been woven together over this time is your... I don't want to use the word resilience, but it is a resilience. It is an inner  love, inner strength to get through this time and to keep listening and growing and learning. Look how amazingly you all have shown up and done this. It tells me so much about In the future, if ever you're faced with something that it challenges you, you can reach back into your beautiful backpack of life and say, I know I can do this because I'm down in the flow. I know Just apply to something else. You can do anything. This is what I see in most of my... All of our NICU mamas and dads when they leave, I think, Gosh, you're unstable. Without having to do it, you're the parents who could lift that car. That's where you hold that within yourself forever more. May you never have to use it. May you never have to go back and  Reach deep for the car lifting strength. But I know that if it was coalescing before, that now you have it because you exercised it. Yes.

[00:30:43.440] - Christina

There's been a lot of exercise on that. We know life happens. At some point, we will have to use it.

[00:30:51.970] - Leah

Yeah, you be sure.

[00:30:54.160] - Christina

Just like now, we will not walk alone. God will be with us. We will have a community of support, and we will be hopeful for what will be to come.

[00:31:09.180] - Leah

That's beautiful. You said hopeful. What does hope mean to you?

[00:31:13.300] - Christina

For me, hope is a great expectation for what is to come. It's not just the expectation part. It has to be great for me because I don't want to put in effort for something that will be minimal. I don't want to believe for that. I believe that Caleb is called to greatness, and so we will position ourselves in that way. We will show up for him in that way, and we will expect that. We are hopeful for our family and for his future, and that cannot be small. No. We have a great hope and a great expectation.

[00:31:59.320] - Leah

Christina, you are a gem, a true light in this world, and so too is Caleb. I'm so grateful to have shared just a few moments here as we prepare to send you off to the next place. As all of you out there who are listening, you're never alone. You're never alone. You will always be part of the ICU Baby Community, our families who are here, our Beyond the Beeps Community. You will always be part of that community. We are great and we are large and you're strong We see everyone there. Do you have any words of wisdom for a family that may literally be sitting behind us here or out there in the world?

[00:32:56.900] - Christina

Yes. I'm going to look into the camera here. For listening online, as a parent, I want to share and just encourage you to not be afraid to show up and advocate for your baby. That is your right. As a parent, you can ask all the questions that you need, how many ever times you need for as long as you need. Get the understanding that you need. If you have the understanding that you need, you have requests, make the request. And please do not walk alone. What I mean by that is you have ICU baby. Your nurses should also walk with you. Your doctor should also walk with you. Child life will walk with you. You have different groups that can come together and support you. Do not hesitate to reach out to them. That's what they are here for, and they can equip you, and they can support your NICU journey. And so ICU baby, thank you for just actually allowing me to come and share more about my family and Caleb, but also ultimately for your support. This is me not walking alone, and that's actually why I can sit here. Thank you, thank you to the whole ICU baby, org and T.

[00:34:27.160] - Leah

It's truly an honor. It really is truly an honor.

[00:34:32.100] - Christina

As is mine. Okay.

[00:34:34.920] - Leah

Well, thank you so much, everybody, for joining us today. If you're out there literally sitting behind us at your baby's bedside, or maybe you're listening on your headphones on your way in to visit your baby, or you're driving to work away from the hospital or pacing the hallway at night with your pumps attached.

[00:34:54.920] - Christina

That was me. Yeah.

[00:34:56.960] - Leah

There's a lot of different ways that we show up as parents in the NICU. Please remember this. We're with you. You are not alone. We'll be with you next time here in Beyond the Beeps. Take gentle care, everyone.