I realize that this blog post is kind of…weird. If I was writing to gain followers or views or make money, this would be an odd post to publish. But because this is kind of my families online journal, I really wanted to record the events of Ezra’s sickness as a keepsake for myself. I cannot imagine looking back on this blog and not having mentioned the crazy journey we went on when our newborn got RSV. If it’s not your thing, that’s fine!
It all started on Sunday night when Ezra threw up.
No, I don’t mean spit up. I mean vomit. My newborn. In my arms.
While it was a bit distressing and quite weird, that was the only episode of vomiting he had so we figured it was a total fluke.
The next day we traveled from Michigan back to Ohio and every time he cried or made noise, he sounded like he had a horribly sore throat/hoarse voice. He slept the whole day, but we were driving in the car, so that wasn’t surprising at all.
The next day was Christmas Day and Ezra was back to his normal self. The other two kids started in with runny noses and coughs, but nothing too serious. And nothing unexpected after having spent the whole week crammed into a cabin with lots of cousins.
On the 26, Wednesday, Ezra started vomiting again. This time, it was almost after every feed. He would vomit and then be perfectly fine. Late that afternoon we noticed he was congested. Again, no big deal. I knew I just had to keep nursing him and try to get him through his first baby cold. The difficult thing was getting him to keep the food down.
On Thursday he was extremely congested and still throwing up his feeds. We finally figured out that the vomiting was from the snot and phlegm in his throat that he couldn’t clear. It would cause him to gag and throw up everything. Theo and I decided to get him into a pediatrician ASAP as we were quite concerned, both about the congestion and the potential for dehydration. We saw a pediatrician who said he looked great, and we just had to keep doing what we were doing and make sure he was eating enough to stay hydrated. I felt very encouraged and was ready to tackle the rest of this sickness.
Friday and Saturday passed with no improvement and by Sunday we were starting to be concerned about Ezra’s breathing. I could hear congestion while he was breathing, and we weren’t sure if it was from his nose or his lungs. We were getting very concerned. We also hadn’t slept more than an hour at a time since Wednesday night. Ezra was still nursing, but not very well, and he was still struggling to keep his feeds down. We had our family doctor look at him and he confirmed that his lungs were pretty junky and we needed to start him on some treatments. Theo had just gotten home from the pharmacy with some medicine when I looked at Ezra and FREAKED. The kid was pale, lethargic and his lungs were crackling. It was terrifying. Theo loaded him up and left for the ER. I stayed at home with the kids, figuring that they would just check him out and send him home again. Maybe offer a breathing treatment.
After an hour or so, my heart just simply would not settle and I knew I also needed to be at the ER with my baby. I called a friend and asked her to come and sit with the older kids (who were sleeping) so I could also be there. When I got to the ER, Theo said everything was going great! Ezra had perked up as soon as he got there and he was acting almost normal. That was around 10pm. We waited and waited for them to tell us what was next, but all we knew was that he had RSV and was going to be admitted “just for the night” for some fluids and obseravation.
First things first, we needed to get an IV in him for some fluids. I don’t know if you have ever been in a room when someone is trying to get an IV into a 6 week old’s veins, but it isn’t fun for anyone. They tried once for about 20 minutes, with no success. There was a LOT of screaming and crying and some blood and finally they quit trying to give him a rest. 20 minutes later, they tried again with the same results. It was now closing in on midnight and my poor boy was so agitated and sick. Finally, in walked a different nurse to try the IV for the third time. This woman felt Ezra’s leg and popped that needle in their like it was her job. Well, it turns out it was her job. She is the one all the other nurses call when they can’t seem to get an IV in. I’m pretty sure she could have done it with her eyes closed.
Once the IV was in, we figured the worst was over and we would just settle in for the night of observation. We decided that I would stay with Ezra while Theo went home to be with the older kids. Theo left around 2 am, and probably immediately after he drove out of the hospital parking lot, things started to go south- fast. As I held Ezra, his breathing began to get worse- more sucking under the lungs and my Mama heart just knew that I was holding a very, very sick baby. VERY sick. The doctor didn’t have the best bedside manner and she kept making comments that were less than comforting for my Mama heart. She wasn’t rude, but she kept telling me all the worst case scenarios and that it was going to get worse before it got better. I was a MESS and I truly thought my baby was going to die. It was the scariest night of my life. The doctor mentioned that the next step would be intubating him, and I texted Theo and said “COME BACK RIGHT NOW”. Of course, Theo had just sent our friend to go home not 30 minutes earlier, so he called our pastor and asked if anyone could come be with the kids. Thankfully, another friend stepped up and made the 3am drive to our house so Theo could also come to be at the hospital. Theo said he went through every single stop sign and red light on the way back to the hospital, and drove wayyy over the speed limit. In hindsight, it wasn’t as bad as the doctor had made it sound, but in the moment I truly thought we were giving Ezra back to the Lord. I had a huge crisis of faith in that ER room and I’m still shaking from it.
After seven hours in the ER, they finally said we were heading upstairs to the PICU. I sobbed the entire journey up to the fourth floor. It took four people to transport him…one pushing the baby, one pushing his oxygen machine, one carrying our stuff and then there was me…just crying. Sobbing. Pretty much useless lol.
The moment we walked into our room in the PICU I was able to be calm. There was something about that unit that just brought so much stability to the situation. He was moved into his giant bed and all the wires were rearranged. He was hooked up to four or five different things and my sweet boy looked so tiny in that big bed.
We finally got settled and stabilized in the PICU around 5 am, and Theo crashed hard on the couch. I pumped some milk and then sat by Ezra’s bedside, not taking my eyes off of him until 7am. At that time, I reached over to Theo and told him I had to lay down or I would collapse. We switched, and Theo sat by his side until 8:30am.
That morning, our nurse walked in and I as soon as I saw our nurse, I leaned over and asked Theo if he thought he was older than 12 or not. I was pretty sure he was pushing 13…maybe. He was incredibly awkward and his hands were shaking. I was terrified that this man-kid was not going to be able to take care of my very, very sick baby. Well, he introduced himself and made me laugh within five minutes, even though I had just had the worst night of my life. He explained how the virus works and assured me that Ezra would be alright. Let me tell you what…that man-kid was the best nurse I have ever had. He was attentive and helpful and so, so caring. He served Theo and I hand and foot, and his care for Ezra was up a notch.
That morning was hard, but also full of hope. After leaving the ER and getting into the PICU, we realized that even though Ezra was very, very sick, he was going to be ok. I can’t remember ever feeling more joy in the midst of a difficult circumstance than knowing my baby boy was going to be ok. They explained that the virus usually peaks at day 5 or 6, and then a recovery process begins. It seems that the horrible night in the ER was Ezra’s peak and now we could begin the recovery. Ezra was hooked up to an IV an high flow oxygen, so he was getting everything that needed to function. However, it was time to tackle how he would be eating during his recovery. I was not allowed to breastfeed him while he was on oxygen because the risk of aspiration was so high. Early Monday morning we decided to feed Ezra a bottle, and he took it like a champ. And then vomited it up two minutes later. After much discussion, we all agreed that he would be best off with a feeding tube. Thankfully, getting it in was not as difficult as the IV process and they immediately began a continuous drip of breastmilk into Ezra’s stomach. The rest of Monday just looked like wires, oxygen, beeping, and so many vital checks. Ezra was checked out at least once an hour, and while it was not very restful, we were so thankful for the care that we received.
At this point we were so exhausted and barely able to function. My memory is already foggy, but at that point I didn’t even know what was happening with our older kids at home. I knew that someone was this them and that they were being taken care of, but I didn’t know anything beyond that. I think having older kids at home during this hospital stay was one of the hardest things. I felt ripped in two- needing to be with my sick baby, and needing Theo to be there, too, but also knowing that my big kids were hurting from Dad and Mom not being there. I am so, so, so grateful for the care and help that they received, but I am still so heartbroken that they also had to go through this.
It was also around this time that we realized how horrible being with your kid in the hospital is. The hospital only provided food for patients, and the parents had to pay for any food. We found the food that we did pay for to be horrible. Like this hard boiled egg…that was the entire entree.
Thankfully, our friends and family STEPPED UP and we were not lacking in the food department. One friend brought fresh fruit and veggies, one friend ordered a pizza to be delivered to the hospital. One friend picked up takeout and delivered it for us, and one friend brought us some treats from chick-fil-a. Living through this experience was NOT FUN, but it has completely opened my eyes to the many ways to love and serve a family that is in the hospital.
Most of Monday and Tuesday were calm. We just needed to maintain Ezra’s stability before attempting to get him better. The process was to slowly wean him off his oxygen, and then to slowly wean him off his feeding tube. About every 12 hours, they would bump down his oxygen and then observe him to see how he did. It’s amazing how it took about 2 minutes to get him hooked up to everything (minus the IV lol) but it took about four days to wean him off.
Monday night was New Year’s Eve and I went to “bed” on the couch at 8:30pm. I slept until 10, then Theo crashed on the couch. At 11:45, I woke him up and we rang in the New Year next to Ezra’s hospital bed. Not exactly where I wanted to be, but after the horrors of the night before, I was just thankful that Ezra was alive and going to be ok.
On Tuesday, Ezra started showing true signs of improvement. At this point, they hadn’t let us hold him just because it was too exhausting for him to move, and every moment irritated his breathing, which caused a lot of coughing.
Finally, on Tuesday afternoon, I was able to hold him and it was GLORIOUS.
On Tuesday, the doctors and nurses started mentioning moving him from the ICU and to a regular pediatric floor. By Tuesday evening, Ezra had shown enough improvement that he got “demoted” to a regular floor- one step closer to home!!!
I knew that moving floors and rooms was a very good step- our Ezra was doing so well! But as soon as we left our comfy room in the ICU, my anxiety reared it’s ugly head. It’s always hard to find the exact trigger point of anxiety, but I know that for me it was leaving the comfort of the room where I realized Ezra wasn’t going to die from this. It was a new location and new nurses and new procedures and it felt cold and scary and like I had more responsibility in Ezra’s care than in the PICU. By Tuesday night, we also knew that our kids at home were really struggling. We were doing our best to take turns spending time with the big kids at home, but that was incredibly exhausting in and of itself. One of us would be at the hospital, and the other one would be at home with the kids. On Tuesday night, I headed back to the house to spend the night at home. It was glorious to sleep in my own bed, but I hated the fact that we were a house divided.
Wednesday morning I returned to the hospital and Ezra was doing FANTASTIC! That morning they weaned him completely off oxygen and he was breathing on his own!!! The next step was to start weaning him off his feeding tube. This was supposed to be a three step process, but about mid-morning I looked down at Ezra and wondered how his feeding tube had been untaped from his cheek. I then realized that it was untaped from his cheek, it was out of his stomach! He had pulled it out, fast-forwarding his weaning process by a few hours and cutting out a few steps. Wednesday around noon, Theo fed Ezra a bottle and he took it so well! YAY!!!! We were so so so encouraged and pleased with his process. Every doctor and nurse said that we would be out of there in no time at all, and that they just wanted to observe him through the night.
NO TUBES! YAY!
Speaking of the doctors and nurses. After being spoiled rotten in the ICU, we found the care that we received on the regular floor not so fantastic. The nurses rarely came in to check on us, and if we pushed the call light, their response time was usually 20-30 minutes. Which is fine when you are asking for a glass of water, but not ok when you are saying that your baby just vomited and his feeding tube came out, etc. etc. In the PICU, we felt like the nurses and doctors were IN CHARGE and while they listened to us, they were fully responsible for Ezra’s care. On the regular floor, we felt like the nurses and doctors didn’t know what they were doing and kept asking us what to do for his care. We were a little baffled…I mean, yes, we are his parents, and we know best. But the entire reason for being in the hospital is to have help caring for our little man. While I didn’t hate the nurses and doctors, I just kept wishing we could go back to the ICU! Lol.
By Wednesday night, we knew Ezra was going awesome and was going to be discharged in the morning. I decided that it was Theo’s turn to head home and have a full night’s sleep in his own bed. I opted to stay at the hospital, and while I was nervous, I felt confident enough because Ezra was doing so well. Well, Wednesday night turned out to be our second worst night of the whole ordeal.
Not only was it incredibly lonely and scary to be in the hospital with my newborn, but I also didn’t feel like the nurses were responding to anything I was asking or saying. After several successful attempts with the bottle that day, I asked the nurses if I should try breastfeeding. The response I got was kind of a shoulder shrug and a “do whatever you think is best!”. Well, I decided to try to breastfeed him. After a bit of effort, I got the kid latched on and he ate great! During this entire process of switching him back to breastfeeding, the nurse never once checked on me. She had to take a weight before and after feeding, but even after calling her with the button she never came back to check his weight. She popped her head in and saw that he was having a coughing fit and left. Of course, as soon as she left, he vomited the entire feed. All over. Everything. Everywhere. I am alone in the hospital room covered in Ezra’s vomit, sobbing. Pressing the. nurse button and NO ONE WOULD COME. Listen, I understand that a nurse has many patients, and they can’t be there for every little thing. I understand that she might have a patient with a bigger struggle/need than me…but I waited for over an hour. After getting all that cleaned up, we decided to try to feed him again. Repeat the process- good feed, then vomit. I was at my wits end and just didn’t know what to do for him. I decided to try a bottle. He took the whole thing- then vomit. At this point, he hadn’t kept anything down in about 6 hours and I was starting to get concerned. When the nurse finally came in, she kept saying “I don’t know what to do. I’m just not sure what to do. What should we do?” I’m sitting there, sobbing, frustrated, angry, annoyed and scared, having no idea what to do. Finally, a doctor came in and said we either needed to put his feeding tube back in, or hook him up to the IV again. After a bit of discussion, we decided to start up the IV.
I stood at Ezra’s bedside and watched as the nurse tried to flush the IV…and had no luck. I don’t know anything about medicine or IV’s, but I could tell that something was not right. The nurse then called in another nurse, and they taped and re-taped and moved around the IV, then hooked it up to the fluid. They left the room. About 20 minutes later, Ezra became inconsolable. I held him and rocked him and sang and prayed over him. I pressed the nurse button and told them I felt like something was wrong, and no one came to the room. About 40 minutes later, a nurse came and gave him Tylenol, then left. I texted Theo and told him he needed to come back. Theo loaded up the kids at 2:30 am, drove to the hospital and we switched. I took the big kids home, while Theo stayed with Ezra. I finally fell into bed at 4 am and woke at 7am with the kids. I got a text from Theo telling me it was a horrible night, but it wasn’t until later that I found out what had happened.
When Theo got there at 3am, he took Ezra and rocked him, swaddled him, held him, bounced him, sang to him, prayed over him, etc. etc. The kid was STILL inconsolable. Not once did a nurse check on him in two hours. Finally, Theo noticed that Ezra’s foot was wet. Upon further inspection, it was also insanely swollen and very red. He called the nurse, and when she saw his foot, she called five or six more nurses in (including the charge nurse). Apparently, his IV had infiltrated his foot. This is common enough and is just one of the risks of having an IV. However, it had been over four hours since Ezra had become inconsolable, and we had told them something wasn’t right for FOUR HOURS before THEO finally discovered the infiltrated IV. Then, the charge nurse explained that all the fluid in his leg contained potassium chloride. Potassium chloride, in the right dose and in the right place helps re-hydrate the body. Potassium chloride in the wrong dose and the wrong place can be extremely harmful to muscles and tissues, as it literally kills cells. As soon as the nurses saw his foot, they administered five shots to counter act the effect of potassium chloride on his foot. They explained the very basics, but nothing more. Ezra’s foot was already blistering and looked like a burn. As soon as the IV was taken out and those shots administered, he calmed down and finally slept.
Around this point, the doctor came in and said that they were putting in Ezra’s discharge papers. We kind of blinked at him, really confused. Sure, Ezra was doing GREAT recovering from the RSV, but his foot and entire leg were still SO swollen and red, plus we knew that he needed to be monitored from the effects of the potassium chloride. The doctors and nurses treated it like it was no big deal and were confused when WE REQUESTED to stay one more night for observation. I know…we had been waiting all week to bust out of there, but after doing a little bit of research on potassium chloride (hint: it’s a mineral also found in abortions and lethal injections), we knew it wasn’t something to be swept under the rug.
So, one more day in the hospital it was. This day was kind of frustrating, as he was fully recovered and seemed fine. The doctors and nurses had great big eye rolls for us and didn’t treat us like our care was important. They kept asking us where we got our information on potassium chloride and just seemed annoyed with us in general. They were still very professional and no one did anything mean or rude, but we could tell they were just annoyed with us. So, Thursday was a very discouraging day. We were exhausted and upset, yet trying to be understanding and compassionate. We were SO READY to go home, but we were also terrified of being the primary caretakers for three kids once again.
Thursday night was our last night in the hospital, and it was pretty “normal”. Ezra got poked and prodded every few hours, and we were up at all hours feeding him, but we were so glad that nothing “exciting” happened. Friday morning I woke up to a phone call from my Mom telling me that my Grandma had passed early that morning. I walked out of the hospital to head home, carrying the weight of grief and exhaustion and worry and thankfulness and rejoicing and SO MANY EMOTIONS. I went home early to collect the big kids, and Theo stayed with Ezra in the hospital until he was released. Theo and Ezra got home around 11 am, and we were finally ALL TOGETHER AT HOME AGAIN!!!!!!
I wish that the story was wrapped up with a pretty bow right there, but the next few days were also fairly hard. Ezra still struggled with his feeds, and Theo and I cleaned up a lot of vomit (both from choking on phlegm in his throat and from the side effects of having a feeding tube). It was the kind of hard that no one can help with, we just had to GO THROUGH IT. Our big kids were absolutely falling apart from the lack of routine and the lack of having their parents around for five days. Ezra was still incredibly needy. However, we pushed through those few hard days and are now almost back to “normal” (whatever normal is with three kids).
I am positive that I will never, ever forget this experience. It has taught me so much about faith, about being a Mom, about my Ezra-fighter, about illness and hospitals, about parenting, and about Theo. I would never choose to repeat what we went through, but I am grateful for the things that it taught me.
