We're standing over Dustin's little crib, just admiring how adorable he looks. We're noticing how he's finally starting to get a little chunkiness and we smile. But suddenly the monitor starts alarming and Dustin's face begins to turn white and his lips blue. His heart rate drops to 56 and the nurse picks him up to give him stimulation by rubbing his back, shoulders and chest. After 10 seconds, Dustin's heart rate and oxygen levels begin to go back up and his skin starts turning pink again. Michael and I look at each other with a sigh of relief as I hold back tears 😔
I would like to say this was the only time Dustin's heart rate dropped but reality is - it wasn't. In fact, this happened numerous times. These episodes are called bradycardia. Bradycardia is a low drop in heart rate, which usually goes hand-in-hand with apnea. Together, these are called "As & Bs" - or, what the nurses call: "spells."
You'd think getting discharged from the NICU and moving to the ICC (Infant Care Center) meant this whole journey got easier and less scary, right? Yeah, that's what we thought too 😕 But quite honestly, we felt more stress, more anxiety and cried more tears being in the ICC compared to the NICU. See, Dustin was a total rockstar in the NICU. He really was, especially compared to all the other babies in the unit with a lot of medical things going on. And although Dustin never stopped being a rockstar, the ICC had challenges of it's own that Michael and I found to be the most emotionally difficult of the whole process.
Dustin's goals have been pretty simple: eat and gain weight. Actually, they call babies like Dustin a "feeder and grower" for that very reason 👶🏼 But with this stage comes DJ having to work on breathing too. Lungs (and eyes) are the last to develop in babies. They say the lungs are not fully developed and mature until 37 weeks gestation. So, any babies born before 37 weeks are considered premature, or "preemies" for short. Dustin was put on a nasal cannula to help give him a little extra flow (or pressure) in his nose to keep breathing. The positive thing was that he never needed extra oxygen... he just needed a little extra pressure. Anyway, Dustin would occasionally have these "spells" and it was heartbreaking, scary and uneasy. I can't explain the feeling... but when the monitor alarms start going off, your heart just sinks to the very core of your body every time. And it was SUCH a roller coaster of emotions. Some days he would have zero "spells," sometimes he would have consecutive days of having none at all and some days he would have four. These "spells" are very normal and common in premature babies and just something they naturally grow out of over time (almost always before their due date). But although this was "normal" to the doctors and nurses, this was NOT normal to me and Michael. In fact, this was by far the hardest part for us to find patience with. All we wanted was to see our little boy with no nasal cannula covering part of his face, no fear anymore of his heart rate dropping and just relief that his lungs have fully developed enough to not have this be a problem anymore. All we wanted was to see our son be strong and healthy like a full-term baby... but we had to keep reminding ourselves that he wasn’t full term yet. I remember a day that he was just over 34 weeks gestation and he had a few "spells." Both of us just broke down and cried. After crying it out (because sometimes you just have to have a damn good cry), we had to bring ourselves back to reality. "He's only 34 weeks... he isn't even supposed to be breathing oxygen for another month and a half... be patient, he will grow out of it."
We prayed every day for God to give us the strength to keep optimistic, to keep positive and to stay strong for each other and for our little man. We prayed every day for God to keep strengthening Dustin's lungs so that these "spells" could subside sooner than later. And with time... they did. Now they're gone and we couldn't be more relieved. But man, we quickly realized how stressful and worrisome respiratory issues are in babies. It was truly the hardest part of this entire journey. I must say though - when Dustin finally got his nasal cannula taken off, it sure showed off his incredibly cute face that makes my heart melt every time I look at him! But maybe I'm just a bit bias 😏☺️
Another really challenging aspect of the ICC is the feeding process. Premature babies, especially as early as Dustin, don't just enter the world knowing how to coordinate the "breathe, suck, swallow" skill like full term babies, hence why they need tiny little feeding tubes for awhile. So, when Dustin turned 34 weeks gestation, we began the bottling process... which became another roller coaster of emotions (go figure). The whole "breathe, suck, swallow" skill is such a difficult thing for early babies to understand so teaching them how to bottle is a very delicate and patient process. Once they understand how to coordinate it all, they get so tuckered out and exhausted because it’s a lot of work for these little ones to suck that much! So whatever amount of milk they don’t take, the rest goes through the feeding tube. Luckily Dustin has been catching on pretty well to all of this because they don’t discharge babies unless they can consistently take a certain amount of milk each day through a bottle. They have these parameters so they know he’ll be able to continue gaining weight once he’s home (which sounds like will be soon enough!). I remember walking into Dustin’s room the morning of Sunday, June 9th with a note on his counter that said, “I drank my WHOLE bottle!” and I cried happy tears because this was just one more milestone - one more crucial step - to coming home ❤️🍼
Aside from the fact that DJ had to master bottle feeding and be able to breathe great without help, the ICC became a world of its own. We were only in the NICU for 11 days - but so far we’ve been in the ICC for 36. It’s become our home away from home. We’ve developed such close relationships with the nurses, especially Dustin's primary nurses that take care of him the most. We spend many sleepless nights on the pull-out couch in his room and countless hours just sitting there holding him, watching him sleep and constantly mesmerized by the damn monitors making sure his vitals are always at normal levels. We’ve never missed a single day seeing our son in the hospital... not one day. We just can’t fathom taking an entire day away because HOW can you go out and do "normal" life stuff knowing that your son is sitting in the hospital getting cared for by people who aren't his parents? Although hospital living is incredibly draining, especially for never ending weeks at a time, we want to be there as much as we can - and we are 💙 For 7 weeks straight (and counting...) we’ve been living out of bags every day. We’ve been sleeping at the hospital 4-5 nights/week. We come home every few days or so just to quickly do a load of laundry, check the mail, repack a new set of clothes, mow the yard, give Luna some love, put out extra food/water for her to last a few days at a time and cook food (so we weren't always eating hospital food and for Michael to have healthy lunches for work). So although we do come home, we spend the majority of our days and nights at the hospital. Michael and I haven’t sat down to watch TV together for two months. We occasionally go out and do things aside from sitting in Dustin's room but quite honestly - we don’t really enjoy doing anything other than simply be in his room. We find happiness and comfort living within the hospital walls. We were told from Day 1 this would be an extreme roller coaster of ups and downs. Nurses prepared us many times that we would have great days and we would have bad days... that we would have setbacks... and that right when you feel like everything is finally on the "up and up," it’s just a matter of time until another bump in the road happens. And you know what? They were right. We went into this journey KNOWING that, but man... it's so much harder than you think when you actually HAVE your first setback or when you actually HAVE a bad day. For awhile we were feeling helpless and defeated... having to talk ourselves into hope all over again through the tears. I remember walking to Panera for dinner one night (there’s a Panera attached to the hospital) and I was having a pretty hard time holding all my emotions in... so I just poured out my tears right in the middle of the restaurant. Michael has always tried being the “stronger” one but I remember looking at him in that moment and said, “Michael, it’s OK to cry. Really, it is. You don’t have to be strong for me.” And instantly tears rolled down his face and he cried. With me. Together. Right in the middle of dinner. And we didn’t care who saw us... we needed that moment just me and him. i think one of the hardest parts about this experience has been all the waiting. Waiting to hear results of his blood tests... waiting to hear results of his eye exams... waiting to hear results of his kidney ultrasounds and of his urine tests. Waiting has become our biggest source of anxiety. It makes going to bed really difficult. Sometimes we’d wake up in the morning with pits in our stomach, afraid to even answer the daily phone call from the doctor with the potential of hearing bad news (although not anymore... now that things are getting closer to going home 🙂) We rarely have visitors because we don’t really want visitors. Our parents come once or twice every week for a short little stay and that’s about it. But there were days I didn’t even want my own parents to come because we never knew if the day was going to be a good day or a day of struggle... and it got tiring trying to stay strong while holding back tears in front of my parents, especially if Dustin was having a hard day. So often times, we just enjoy being in his room without anyone else there. We like the peace and quiet and the freedom to express our emotions in any way we needed without another set of eyes on us.
It’s been hard scrolling through social media seeing people I know have babies and seeing pictures of them already home 2 days later or going on walks in the stroller because the sun is shining (I feel like I don’t even see the sun anymore). There was one day someone posted something about being up all night because their baby wouldn’t sleep and I remember thinking to myself, “I wish I was having a sleepless night from my baby not sleeping... because that would mean Dustin is finally home.” Seeing people post pictures of them outside enjoying the sun, out on the lake, at the park, going on family walks, having BBQs and getting happy hour on patios makes me feel even more like I’m on my own island. I feel like I’m missing out on so much and some days I just feel so alone. But I have to keep reminding myself of two things: 1. This is just a season of life and it will pass. I'll look back on this some day and it'll seem like such a small hiccup in our whole parenthood journey. 2. To be thankful for how HEALTHY Dustin is and how blessed we are that he had no complications, no medical concerns, no neurological concerns... no anything. Just strictly a "feeder and grower" which we really should be SO thankful for. We're surrounded by families with other babies having much more complex things going on like open heart surgery, brain bleeds, heart defects, disabilities, infections, cancer, etc... and when you're around an atmosphere like this, you start to appreciate just how good you truly have it 🙏🏼 I don't write all of this to ask for sympathy. I write this because I want to give people an insight into the challenges and reality behind this whole journey that nobody ever talks about. If I can be support for even ONE other person in this world, I'd be happy. This experience is something you can never prepare for no matter how much of an insight you've had from people telling their stories. It's truly an experience you will never fully understand until you go through it - which I hope none of you reading this ever have to.
Hard times reveal true friends.
You know what though? The saying, “Hard times reveal true friends” is the most accurate statement ever. It really is. This experience has brought out the best character in people and (sadly) the worst character in others. It’s been pretty eye opening for both Michael and I. We’ve had the most surprising people reach out to us and offer help. We’ve had great friends and family messaging us on a weekly basis to check in and see how we’re doing. We’ve had people we aren’t even close with donate money and gift cards. But we’ve also had friends completely neglect us. In fact, I even lost a friend through all of this. Once again, we just want to thank everyone that has reached out and supported us. We truly have been OVERWHELMED. THANK YOU to all of you that gave us gas cards, grocery cards and coffee shop cards. To all of you that mowed our yard, made us meals, donated money, sent us messages of prayer, gave us baby gifts, brought us to Top Golf, donated diapers, checked on Luna 😽... thank you so much. We've been writing all your names down so we can see just HOW MANY people have thought about us and helped us out. And let me tell you... it's a long list of amazing people we will never forget. You all have hearts of gold... and you know who you are. I am so happy, relieved and excited to close this chapter of our lives and open a new one. My patience and strength has never been tested as much as it has over the last 2 months but God is so good you guys. He really is. He has been strengthening Dustin throughout this journey and we are beyond ready to start this adventure together as a family in the comfort of our own HOME. I’m guessing it’ll be another 2 weeks... but we’ll see 🙏🏼🙂
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