Evey's RSV Story

I'm feeling burdened to share this story. I am not a writer at all. I'm sure there are a million spelling errors.

When Evey was 4 days old, I noticed she was getting a really nasty nose and starting to cough every now and then. I thought, Oh great, my newborn baby has her first cold and she’s not even a week old yet. The next day she had more snot and you could hear her breathing through a stuffy sounding nose. I went out that day and bought an automatic nose sucker (which I HIGHLY recommend, best 20 bucks spent so far) because the bulb sucker I had wasn’t getting enough stuff out of her nose. That night she was really fussy and super stuffy. She was starting to gag and choke on her boogers. She woke up around 2:00am gagging and, what looked like to me, her trying hard to breath. I woke Chris up and we took her temp. It was 101.2 I was starting to get worried about her and was debating on a trip to the E.R. I called our on call pediatrician and she said it’s up to us if we want to go to the E.R. or wait until 9:00 that morning and let the Doctor see her. I was torn trying to decide what I should do. I wanted to go to the E.R. but it was in the middle of the night. We would have to call and wake up friends to watch Ezekiel and Chris had to be at work in a couple hours. I felt bad for him being up and losing sleep because he works so hard. I also didn’t want to be the over paranoid mom that brought their kid in for a cold and she would be fine. I decided to wait until 9:00 am to see her PED.
Evey and I didn’t sleep at all. Got to the PED's and they diagnosed her with RSV or Respiratory Syncytial Virus. My heart sunk to my chest because I have 2 friends who's babies just got out of the hospital with RSV. I didn’t really talk to them about there experiences but I did know it was one of the hardest things they have gone through at that point in their life. He told me I didn’t really need to go to the hospital with her and that he would set me up with everything they would do for her at the hospital, just with out all the poking a prodding. I did a breathing treatment with her there, got a prescription and some steroids for her and was back at home.

She is 6 days old now and getting worse as the day goes by. He did let me know that it gets worse before it gets better. She is looking pitiful and I just didn’t have a good feeling about it in my mama gut. Chris got home from work and I decided to call our PED again and let them know how I felt. She said to do another breathing treatment and give her a dosage of the steroid, wait 30-45 minutes and call her back. I did and nothing helped or got any better. I was really feeling like we needed to go to the E.R. so we call my second mom and dad to get Zeke and have him spend the night with them and we will let them know what is up.

We got to the E.R. around 10:30 pm and were put back in a room right away. They took her temp and it was 101 still. They also took her oxygen level and it was at 86. Obviously, normally your Oxygen level is at 100, so that freaked me out! They put her on oxygen.

At this point she is working really hard to breath. You can see her rib cage cave all the way in to take a full breath. Also, her neck was caving in at the bottom from her working so hard. She was breathing like she just ran a marathon trying to catch her breath. It was so hard to see my new baby that was just born 6 days ago having trouble breathing,coughing and then gagging on the mucus that is in her chest. She would gag and cough so much that she would stop breathing for seconds at a time. For me it felt like forever waiting for her to take her next breath. I know it was super hard for Chris to see her like that too. I was feeling completely helpless for my baby girl. This is not how I planned the first weeks of my baby's life to be.

Since she had a fever they wanted to make sure she didn’t have any other infections. The Doctor said he wanted to do a septic work-up on her. Now, just like you, I had no idea what the heck that was. So here is a breakdown.
This septic work-up typically includes a:
•complete blood count
•blood culture
•urinalysis and urine culture
•spinal tapp so that doctors can order an examination of the spinal fluid, including a spinal fluid culture
•chest x-ray (although this is often left out if the child lacks respiratory symptoms)
•stool studies if the baby has diarrhea
•viral test or culture, such as an RSV prep or flu test

Aaahhh right!! They did all of that accept the stool study because she didn’t have diarrhea. I was ok with all of them except the spinal tapp. It freaked me out and scared the poo out of me!! The doctor talked us into doing it because that was the only way to see if she had meningitis. I felt pretty confident she didn’t have it because one of the symptoms of RSV is fever. You can refuse it, but in the moment, I was just so scared out of my mind. I wanted my little girl to get better. He explained to us how it works and what will be done. Chris didn’t want to be in the room, I don’t blame him but I couldn’t leave my sweet girl. They laid her on her side all the way on the edge of the bed. The nurse held her in a C shape and I was there by her little head trying not to fall apart and praying that the spinal tapp would go smoothly. Then they needed to put in an IV for her antibiotics. They tried for an hour to get a good vein and poked her 3 different times. Her little arm and legs were bruised from that stupid rubber band thing they use to cut off the blood circulation. Got all of that done and we were waiting to be taken upstairs to her room.

Evey is still struggling to breath and at this point really hungry. She hadn’t nursed since 5:00 that day. Obviously when babies nurse they breath through their noses, but Evey couldn’t. She was rooting like she was hungry but anytime I tried to feed her, she wouldn’t latch on. It broke my heart. The only thing I could physically comfort her with wasn’t happening. I was super worried about her starving and then I was super worried about my milk supply. We finally get up to our room and they hook her up to the oxygen machine and up to the monitors. It monitored her oxygen level, respiratory rate and heart rate. They also deep suctioned her nose which was the craziest thing. It’s a nose sucker on steroids! They did a chest suction too which was a long skinny tube that goes from her nose all the way to her lungs and suck out the mucus. So gross and hard to see but what a difference it made. After they did that I wanted to try and nurse her since she could breathe a little better. I nursed her for like 3 minutes and 4-5 nurses come rushing in, pulling her off of me and checking her out. They said her oxygen level was really low and her respiratory rate was really high so they didn’t want me feeding her any more. WHAT?!?! I can’t feed my newborn baby? She got enough food to fill her belly I guess because she fell asleep right away. She didn’t sleep all day and was slap wore out from working so hard to breath.

Chris went home to get some sleep so he could go to work in a few hours. He left and I was, all alone, with my 7 day old baby, who looks so pitiful sleeping with wires all over her IV in her arm and an oxygen tube in her nose. I really have no idea how I felt because I had so many feelings. Scared for my little girl, guilty for letting her get sick, mad that God let this happen, scared she might not make it, feeling guilty/responsible for her not making it, felling bad for pawning my son off on other people, etc, etc. I was beyond tired so I just lost it. Bawling my eyes out over my little girl, Begging God to make her better.

I tried to sleep but I couldn’t. I had to make sure she was breathing. Even though she was hooked up to machines that would notify the nurses if anything was happening, I couldn’t sleep. I couldn't take my eyes off her. The what if’s filled my head nonstop. Morning came and I met the Doctor that would be taking care of us. I say us because he not only took care of my little girl he was there for me too. Informing me of everything they were doing and why they were doing it. He was the best.
They came in almost every 2-3 hours to suction out her nose but her breathing was getting worse. They brought in a respiratory therapist and they hooked her up to a high flow machine. What that is, is a machine that pushes the oxygen harder into her lungs so she doesn’t have to work so hard. It wasn’t breathing for her but it was helping her breath. They put her on the highest setting, which was a 6, and was on 4 liters of oxygen. They didn’t want her to have anything orally while on the machine because she could aspirate and choke. She didn’t have anything to eat for 5 days! She was on an IV so I wasn’t worried she was dehydrated. I was worried that she wouldn’t want or know how to nurse when she was able to. The worst part was when she was hungry and I couldn't do anything about it. It broke my heart knowing that I had everything she needed right here and I couldn’t give it to her.

On day 2 Evey’s IV went bad so they had to put in another one. That was crazy!! I don’t even know how many times they tried to get one in her. After an hour of trying, they finally got one in her foot. The very next day her IV went bad again! They had to call a special person to come and do it because they were having trouble, again. They lady got there 2 hours later and got it in only after2 tries. She was taping it off and as she was pulling away the tape got stuck on her glove and pulled the IV right out…..It was silent in the room for a minute. The lady, nurse, Chris and I all looked at each other. She felt SO bad you could see it all over her face. You have got to be kidding me I thought! I know she didn’t mean to. I couldn’t get upset with her. I did want to scoop my baby up and run away at that point though. Two days later at 6:00 in the morning, the nurse came in to give Evey her rounds of antibiotics and noticed her IV was bad again. This time I was so over the IV thing it wasn’t even funny. They called a nurse from the NICU to put in a new one. She was amazing!! Got it the first time and was super fast. I told her that if this happens again I only want her to do it!

Days 3,4 and 5 were her worst days there. They were my worst days there too. She was getting worse at one point and the doctor said if she continues to go that way she will be in the ICU on a breathing machine. My heart sunk. I thought right then and there that was not going to happen. I was mad at God for letting this happen to MY girl! She is band spanking new to this world, she doesn’t deserve this. She's just a little baby. Then I realized she is not MY baby but Gods baby. God blessed me with her and he can take her if he wanted to. I'm not in control of her life at all. Who am I to be mad at you, God? From that point on, I was beating on God's chest, begging him to make this little girl better. If she wasn’t going to get better, help me to be ok with that. Hold me in your loving arms. I knew I couldn’t do or get through this with out him. That is the truth for sure!

By day 6, Evey was still on the high flow machine. Not getting any worse but not any better either. They tried to bump her flow down one but she got bad right away. I just kept on holding onto God’s promises. He is my solid rock on which I stand. All other ground is sinking sand.
I had been pumping the whole time and wanting to at least bottle feed her but they were still nervous about her choking. They let me give her pedisure an ounce at a time. She chugged it down the first time. I was so happy! My little girl still knew how to eat. It was 1 ounce every 4 hours at first then bumped up to 2 ounces every 4 hours. Finally on day 7 they let me give her some mama’s milk! She was eating 2 ounces every 3 hours. Sometimes I would lie and say it had been 3 hours when it had really only been 2 and feed her. She was hungry and I was going to give her what I thought was best.
Day 7, she was bumped down on the high flow machine and was responding well to it. Day 8, tried to bump it down some more but it was a no go. As soon as they bumped it down, she started working hard to breathe again. It was crazy. Waiting for her to get off the high flow was so hard. She was getting better but as soon as they bumped it down, she started working again. The high flow machine was at a 2, which is the lowest setting, and she was stuck there. Barely needing it but when it was gone she was breathing heavily. So frustrating.

Day 9 came and they took her off the high flow!! I was so excited because that was one step closer out the door. She was still on oxygen at this point but they were going to try and wean her off through out the day. They did and she was responding great to it.
Day 10 came and she was wire, IV and oxygenless! Before she could go home they needed to watch her for at least 12 hours to make sure she was truly ok to go home. She was still sick and would probably continue to be sick for another week. She didn’t need the breathing assistance though and that’s all that matters. By 6:00 that night we had our discharge papers in hand and packing up shop. We were going home!!

I’m so thankful for every Doctor, nurse, nurse assistant, friend and family member who brought food up to the hospital. You all made such a huge impact in my life during that time and I’m truly grateful for it all. I learned so much and grew in my walk with Jesus. For that I’m thankful and will share my story.