Our unexpected hospital stay

Monday morning around 4am, Jack cried out in his sleep. It was a weird cry. He sounded like he was in pain. He did it a couple more times before I got him up and nursed him. He had trouble nursing and did the sad, pain squeal a couple more times. He screamed hysterically while I changed his diaper and had trouble calming down. I finally nursed him back to sleep.

He cried out a few more times in his sleep. He woke up for the day and every time I touched him, he seemed to be hurting. He was overly fussy, and needed to constantly be held. He started grunting and curling up on his stomach. I could definitely tell that he was not being himself. I was trying not to be paranoid, but my baby seemed to be in pain. Nathan came home for an early lunch at noon and I told him my concerns. He is usually pretty good at helping me decipher my paranoia from real concerns. He agreed that Jack seemed to be in pain and that we should watch him closely. We started to make lunch, but Jack seemed to be getting more and more upset. Nathan noticed that he had suddenly started breathing very fast. Nathan counted his breaths while I checked his temperature. He had a slight fever, and Nathan counted 80 breaths in one minute. (High for a newborn is 60). I called the doctor immediately. She asked if I could come in at 4. I told her I needed to come in earlier, and she told me to come right away. Thank goodness my mom was there to watch Sadie, because Nathan and I were able to go in together, and I definitely needed him.

On the drive to the doctor Jack got worse even more quickly. I could tell just by touching him that his fever had climbed even more, and his breaths were so quick. I started to panic. We got right back at the doctor and she could tell almost immediately that it was something pretty serious. She said, "He needs to be a Primary Children's right now. And he needs to go by ambulance." And then suddenly the room was filled with other doctors and nurses and they were hooking him up to oxygen and prepping him. And just a minute later the room was filled with firemen and they had a gurney and I couldn't believe what was happening. They were asking me questions and my head was spinning and I was crying. I wish I had taken a picture just because it was so crazy, but obviously my mind was somewhere else. That tiny doctor's office room was packed with fire fighters and EMT's and doctors. It was surreal.

I asked Nathan to ride in the ambulance because I knew I needed to cry or I was going to explode, and I didn't want to be that crazy lady sobbing in the back of the ambulance. I followed in our car, updated my mom, and then had a good cry. We had only gotten to the doctor's office about 10 minutes ago. And now my little baby was riding in an ambulance and I had no idea what was wrong. My doctor had been pretty panicked and that didn't help me at all. It had been so high stress in her office and I was definitely freaking out.

We got to the ER at Primary and it was actually a lot more clam. I felt better just knowing he was in a hospital that had the equipment needed should things get bad, and they were just more calm. He was on a small bed in a big room with several doctors and nurses all over him. He was quickly stripped down hooked up to IV's, monitors, and oxygen. He was given medicine and started on antibiotics. They didn't know if he needed them yet, but it was a precaution that they do for the little guys while they run tests. People came in to draw blood, take x-rays, and do a spinal tap. The spinal tap was not successful. They tried again, and it still didn't work. The doctor said they would just try again tomorrow in radiology. Little did I know that those two failed spinal taps would literally change our whole hospital stay. I probably would have stopped that woman right there and yelled, "NO DON'T DO IT!!! LET THE RADIOLOGIST DO IT WITH HIS ULTRASOUND AND SPECIAL EQUIPMENT AND YOU STOP RIGHT THERE!!!"

About halfway through all these tests and procedures, I realized I had hardly eaten all day. It was now about 2pm and my blood sugars took a huge dive. I also think I was having an adrenalin crash from how crazy things had been. I suddenly was dripping in sweat and Nathan told me I looked really pale. My brain was all foggy. One doctor told me I could come over to hold Jack and as I stood up, suddenly everything was spinning and I had to sit back down right away. I almost passed out. Luckily a very sweet nurse brought me tons of snacks and diet coke and I started to feel better.

We sat in that room for a while waiting for them to have a room to admit us to the actual hospital. Once all the doctors and tests were done, we got to pull our chairs up next to his bed and hang out with him. He was doing a lot better. They had given him some tylenol and sugar water which helped with his fever. I got to nurse him, which proved interesting with him hooked up to so many things. We sat and talked about things. Our head doctor for the infant unit came and talked to us. Everyone seemed to be confident that they would figure out what was wrong by tomorrow, and we'd only be in the hospital for 24-36 hours tops. I hated the idea of being in the hospital at all, but it didn't seem too bad to be thinking about leaving the next day.

We got a room and headed upstairs. Jack settled into his bed that looked like a tiny jail cell and I hated it. Nathan forced me into letting him stay the first night. I was a little bit of a mess. I still hadn't really stopped crying completely, and my little near-fainting incident left me pretty weak and shaky still. Around 6 we both went home to get dinner, see Sadie, and so Nathan could pack a bag. That meant we had to leave Jack alone for a couple hours and I bawled the whole way home.

I actually slept well that night, mostly because my body was brain were so exhausted. I had to wake up to pump, and I cried each time because I missed Jack. Nathan did not sleep so well. He already had a headache from the craziness of the day, and then he had to deal with nurses come in and out to feed Jack and check vitals, machines beeping, and the antibiotics needing to be changed every hour. Jack's fever also came back, and they spent the night trying to chase it back down. Nathan also said the bed in the room was so uncomfortable, it felt like he was "sleeping in the woods." He's a bed wuss. It wasn't that bad.

I went over in the morning and Nathan came back and forth between work. I took Jack down for his third spinal tap attempt in the late morning. They doctor did an ultrasound and said a hematoma had developed from the two failed attempts the day before, but that he thought there was enough fluid to still get some. I felt confident and went back upstairs to wait. They brought him back and casually said, "We couldn't get any. We'll try again in 2 or 3 days." I was so shocked I don't think I said anything. Two or three days?! WHAT? We were supposed to be going home that night or tomorrow morning!!

Here's a warning for you. See that shirt I'm wearing? With all the weird designs? I wore that half of the days we were in the hospital. It was comfortable and really easy to nurse in and nursing was super hard with all his cords and wires. So pictures might look like they're all from the same day when actually it's just because I took the same shirt home and washed it every day, then wore it again, ahaha.

I cried some more. We felt frustrated. All of the other tests they had run were coming back negative and everything was hanging on this spinal tap. They needed to be able to rule out meningitis, and they couldn't without that spinal fluid. Sadie came by to see us that night and she wanted to hold and touch Jack so badly. It was sad. My mom stayed with Jack for a while so we could take Sadie out. We got her some dinner and dessert and played at the park.

I slept at the hospital that night and Jack's fever still wouldn't go away. Wednesday was a hard day as I started to tell myself it was something serious and Jack was going to die. We also just had to wait with no progress because they wouldn't attempt the spinal again until Thursday. That evening was the first time Jack's fever was low, and we started to get hopeful. His heart rate and breathing were still high, but there seemed to be a little bit of progress! I slept there again Wednesday night.

They had these awesome cars for the kids to ride around in. This hospital really was incredible. Even though I didn't want to be there.

One sweet nurse brought in a mobile that played soft music and projects lights on the ceiling. I swear Jack slept better with it on, and it made the hospital room feel a little more homy.

We were anxious for the spinal on Thursday, and were pretty bummed when they told us they couldn't do it until 4. I went home to see Sadie and take a nap while Nathan hung out for the spinal tap and around 2 I woke up to a text saying they tried an ultrasound and decided the hematoma was too big and they wouldn't do the spinal. At all. He said our doctors would just have to treat him as if he had meningitis since he couldn't rule it out. That means a 21 day round of antibiotics. We were not expecting that, and I felt so frustrated that we just couldn't get this friggin spinal tap!

Our team of doctors didn't like the idea of treating for a sickness they didn't know he had, but decided they didn't have much else of a choice. My in-laws came out that night and got to meet Jack in th hospital. Then they took Nathan and Sadie out to dinner. I was a little too emotinally unstable to visit with people, haha. I drove around and cried then ate Carl's Jr alone in my car. While crying. I slept again that night, and although Jack's fever, heart rate, and breathing continued to stabilize all night, I was worried. Friday morning the doctors brought a plan to us. They wanted to get Jack home that day. BUT, he would be going home with a picc line and we would need to give him 21 days of meningitis antibiotics. The idea of going home sounded great to me, but I had a really bad feeling about the picc line. We didn't know for sure he needed all those antibiotics. I was worried about the care I would have to give to a picc line as well as having to carefully administer antibiotics every couple hours while adjusting to life with 2 kids. It was also going to be insanely expensive. I felt really conflicted. But after getting some training on the picc line, I was feeling a little bit better.

My crying and eating in my car, hahaha. I had to send this to Katie and decided it needed to be documented. I felt so crazy.

We actually really loved the hospital food. We got a big lunch thinking it was our last and we would be going home in a couple hours. Not so much.

A social worker gave us this faceless, creepy doll for Sadie. It had it's own picc line and she said Sadie could play with that picc line when I gave Jack his antibiotics. And I was like, "Nope that's the creepiest thing I have ever seen and I am burning it when we get home." Ps. There's the shirt again.

Then our doctors came to us with bad news. The infectious disease team did not like the picc line idea. They wanted us to stay and run more tests. (So we didn't even need the evil doll). They ordered a few more blood tests that day. Some to re-check things they had already checked, and one to check for a virus they hadn't checked for before. The parechovirus. We found out later, they should have checked for this virus as soon as the spinal tap didn't work out. But oh well. I wasn't holding out much hope for these blood tests. Everything had been negative so far. I felt like we'd never get answers. But we were definitely trapped there until the results came back on Saturday. Or so we thought.

 Nathan was staying there that night, and right as I was about to go home around 5, one of our sweet doctors came to us crying (she was just as frustrated as us), letting us know that we wouldn't be going home tomorrow. There were more tests infectious disease wanted to run and it would likely be Tuesday, but maybe not even then. I cried too. In fact, I drove home and cried harder than I have cried since Madelyn died. I was so frustrated and so scared and stretched so thin. Not to mention my hormones and the fact that I was running of 8 hours of sleep in 3 days. My guilt for leaving Sadie was piled high. My pain over watching my baby suffer was killing me. And the fear of no answers was eating me alive. I cried and cried and then went home and held Sadie for a long time. My mom is awesome and offered to go out and relive Nathan for a few hours and let our family have a somewhat normal Friday night. Nathan came home and we ate dinner and watched a movie with Sadie. Then Nathan and I got some time to just hang out and be alone before he went back for the night and I tried to sleep. That night was much needed.

I woke up that morning and felt better than I had in a while. It's amazing what sleep can do, haha. But as I was getting ready to head to the hospital, I got a casual text from my husband. "The parechovirus came back positive. No need to rush out here. Doctor says we can go home today." He was so calm, like it was no big deal! (He told me later he was half asleep and everyone kept coming in to talk to wake him up and talk to him). I honestly didn't believe him. I called him right away and he explained. The other blood re-tests had come back negative. But the blood test for the parechovirus was positive. He had it. We had an answer! It was caused by viral meningitis (the much less scary meningitis), and he would need no antibiotics. It was a virus that just ran it's course. And since Jack's fever had been gone a couple days and his vitals were perfect, they could send us home immediately. 

I was freaking out inside, but still not getting my hopes up because so much had gone wrong up to this point. I still packed my bag to stay that night, but I did pack an outfit for him to come home in. My mom and Sadie came out with us, and Nathan met us down at the cafeteria where we all got a big breakfast. When I got upstairs I finally started to believe it was really happening. Our doctor brought us the paper work. The nurse unhooked him from all the machines. Then it was just a waiting game for the attending to come evaluate him before we left. I got nervous the attending was gonna tell us we had to stay, haha. Sadie got to play in the awesome play room, and then my mom and I took her on a walk to kill time. (We waited about 2 hours before the attending came). While we were walking I got the text from Nathan that we were officially approved. WE COULD GO HOME.

A nurse came in and unhooked him from all the machines and took his IV out. This is when I really started to believe he was going home, even though I was still nervous. I could carry him around anywhere I wanted! Ps. notice what shirt I am wearing. Haha

Eating our breakfast and getting excited! 

On our walk. The hospital really is beautiful and has incredible views.

Homecoming outfit round 2. I brought this outfit with me to the hospital on Tuesday and carried it in my bag all week. In a moment of anger and frustration on Friday, I ripped it out of my bag and threw it in the back of my car. I felt like he'd never wear it. Thankfully it was still in the back of my car when we needed it the next morning.

It felt so good to leave that hospital. I am so thankful for the medical professionals who took care of Jack. My doctor, the firefighters, the emergency room team, our nurses, our doctors, the infectious disease team,  and the radiologists. Everyone was so sweet and took such good care of our little boy. They took all our concerns seriously, and did everything they could to make sure he got better. Even when I was so frustrated at the infectious disease team for keeping us there, I know they were just doing all they could to make sure our boy was healthy. I am so thankful for that. Primary Children's is an incredible place!! (Not just because of their delicious food, free breakfast, amazing playroom, gorgeous views of the valley, and Ronald McDonald kitchen. But those things definitely help.)

I tried to type this up a couple times while in the hospital, and I just couldn't do it. It made me feel sick. Jack's time at Primary Children's hospital was incredibly hard on me. I know people deal with much worse in terms of sick children, but he was only 1 week old, they couldn't figure out what was wrong, I was going through an insane hormone crash, Nathan was in the last week of his semester and a busy time at work, and Sadie was struggling at home. I was a mess. The first couple days I was sure Jack was going to die or have long last effects of this illness that no one could find. And then even as he got better, there were no answers and we were quite literally trapped there while they ran more tests. I was a mess. I am sorry to anyone who had to suffer my dramatics, but I can't explain how hard it was to watch Jack suffer with no answers. He is home now and doing so well. I am already forgetting how bad it sucked to spend those 6 days there. We feel so blessed that Jack is okay, and that we have answers, and that we're home. Thank you to everyone who loved, prayed for, and supported us!! We felt it all.

Lady probably had a harder time with us gone than Sadie did.

sooooo exhausted.

Both my babies together. Best feeling in the world.