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Wednesday, March 1, 2017

Chance Goes to the Hospital

January was one for the books. It pushed us and challenged both Andrew and I individually and as a couple emotionally, spiritually, and physically. 

I've put off writing this post about Chance's time in the hospital because honestly reliving this ordeal is pretty rough for me. I've started and stopped this post more times than I can count, but I'm finally ready to document this life-changing time for our family. (I've also debated whether or not sharing this experience in such detail, but since I think a whopping total of like 4 people read my blog I've decided to lay it all out there!)
Here we go...

The beginning of January started off pretty good for us. We had enjoyed our holidays and were ready to get back into a groove. After 13 (wonderfully exhausting) weeks my maternity leave was up and we were (slowly) getting back into a rhythm and learning how to adjust as full-time working, new parents. We blessed Chance the first week of January (full post on that here), then about a week later Andrew and I both caught colds. Before we knew it, Chance had come down with a cold as well and was coughing, pretty phlegmy, had a fever, and was acting pretty lethargic.

Anyone who is close to me knows I have self-diagnosed myself with what I call "health anxiety." I'm entirely convinced this is a real thing. It's not quite hypochondria (I never actually go to the doctor to get tested for all the crazy things I convince myself that are wrong) but I WORRY a lot about me or loved ones getting sick. Ever since losing my dad unexpectedly and my mom getting cancer, I tend to freak myself out about stuff like this. So let's just say bringing a baby into this world and having his health and well-being entirely dependent on me threw me through a loop as it was. Then combine that with him getting sick and it was literally like Heavenly Father took my biggest fear and handed it to me as a chance to learn and grow.

So naturally I take Chance into the doctor once he starts coughing, sneezing, and has a mild fever. The week he got sick I took him in three days in a row, then we took him to the hospital 2 nights in a row after that. They have this place called the "suction" clinic where they clean out your babies nose (think Nose Frida on steroids) and evaluate whether or not your baby should be admitted to stay in the hospital to be monitored.
The first night we took Chance in they actually joked that Andrew and I were paranoid first-time parents. They checked him out, determined he was fine, sucked some boogies, then sent us on our way. When Chance still seemed worse the second night (he had been sick about a week at this point) I knew something wasn't right. Because we had taken him in literally 4 days in a row, I was hesitant to go back in again. I was actually embarrassed for taking him in so much but I knew something was off. Chance just seemed sad and really mopey, so I finally decided to call my next door neighbor , Kelli, around midnight to borrow her Owlet and check his vitals. I am entirely convinced that my prompting to call her, and the events that unfolded after were inspired and truly miraculous.

Kelli came over right away with her Owlet, and spent at least 30 minutes trying to hook it up. We were having trouble connecting to the wifi and getting it to work and I kept telling her not to worry about it and to go home, it wasn't a big deal and I'd take him in tomorrow. (After Chance as better and we were home, I found out that Kelli had prayed just when were about to give up and it finally connected). The second it connected the oxygen alerts started going off and showing that his percentage was below 80 (it should be 98-100% always, so this was really bad.) We thought something was broken and it wasn't reading back, then we noticed it was reading all the other vitals properly. That's when I realized something was really wrong and we needed to get Chance to the hospital. 

Around 1am we decided to take him to the hospital. They checked him out at the suction clinic at American Fork hospital and decided to monitor him overnight as a precaution. It was mostly pretty much downhill from there.
We were admitted and received our own room, and they started the oxygen. I will forevermore have nightmares about the beeping sound the vitals machine makes when oxygen drops below where it should be. We began the 3 day process of giving Chance more oxygen, only to see the numbers continue to drop and drop. The first night we were there, Chance was so restless with the oxygen in his nose. It was clearly bugging him and after a few hours I decided to take him out of the bed and hold him. I got him comfortable and held him for 6 hours straight all through the night and into the morning. I don't think I even blinked the whole night. 
The next day he continued to decline. We kept getting higher levels, then different types of oxygen, and later that night our families came. Andrew had to leave the hospital just for a couple of hours (of course his biggest meeting fell on this day) and I can honestly say this was the most scared I have ever been in my life. The monitor kept dinging, nurses would rush in, give him more oxygen, and the cycle continued. Chance also hadn't opened his eyes since the night before and panic continued to grow. 

Because the situation was getting really scary, my mom and sister came stayed with us. Andrew's parents also were there so much and we were so grateful. Andrew and I both hadn't slept for even one minute in two nights, and my panic and fatigue was really starting to set in. Around 2am on the third night, a social worker came to step in and help bring some calm to the situation. The only time I have ever worked with a social worker was when one came in to tell me my dad had passed away, so you can imagine my hysteria when he came to Chance's room. After settling me down he explained he was just here to help and offered me a room to try to get a couple of hours to sleep next door. After a lot of coaxing from my mom and sister, Andrew assured me he wouldn't leave Chance's side and I finally decided to try to get a couple of hours of sleep. 

I'll never forget waking up a few hours later, as it was truly scariest moment of my life. My sister came in to wake me (which took about 15 minutes due to how tired I was) but she calmly tried to tell me that Chance had continued to get worse and that he was going to be transferred by the life flight team up to Primary Children's hospital because they could no longer give him the levels of oxygen and support he needed at American Fork hospital. When I finally remembered where I was and what was going on it hit me hard. I was barely in control as I rushed into his room to find him being prepped on a gurney to go into an ambulance (they were going to life flight him but the extreme fog that night prevented this). I was so hysteric Andrew gave me a blessing in the other room, and it was like someone lifted me up and literally carried me into the room where Chance was. I was given a power I didn't know I had to pull myself together and take care of my baby. It was like a light switch flipped and I was able to handle it and do what he needed, which was be there to hold his hand and talk to him, sing to him, and tell him everything was going to be alright. I will never forget this moment for the rest of my life. I was 100% focused on being there for Chance.
After they got Chance changed over to the bi-pap mask, Andrew followed behind as I rode in the ambulance with him up to Primary Children's hospital. 
It was the foggiest night ever and the driver was still going almost 90 the whole way. He was really nice to me when I told him I had always wanted to ride in an ambulance but this sucked way worse than I imagined. I remember laughing when he said "I can turn on the siren and go even faster if you want!" 

The whole way up I just prayed and prayed. I remember just praying that he would open his eyes, I hadn't seen his eyes in almost 3 days now and I just wanted his eyes to open. 

When we got up to Primary Children's it was like walking on to hallowed ground. This place really was sacred and the sense of calm we felt when arriving was so refreshing and much-needed. The team of doctors met together when we arrived and did a full debrief on the situation. They jumped into action and I was able to breathe easy knowing we were in the right place and that he was in the best hands he could possibly be in. Chance was on the bi-pap mask for a long time, and I absolutely loved that he kept his binky in the whole time. It was amazing and kind of funny in the midst of this nightmare.
Notice his binky in his mouth! :) ^^^
It was determined his RSV had also turned into bits of pneumonia in his left lung so after another full day and night of decline it was determined that he needed to be intubated. 


There is no cure for RSV, babies just need to ride it out, so intubation is basically the final step for little ones battling this. The idea is to put the breathing machine down his throat and it breaths for him so he can rest and get through the virus. This is extremely rare (about 2% of babies with RSV are intubated) so when we asked why this had happened to Chance we were told "he has thick mucus and bad luck!" Such a bummer. One of the worst things you can see as a mom is your baby being paralyzed (literally they have to give him a medication to paralyze him for 30 minutes so they can get the tube in place.)

Chance was intubated for almost 3 days. Once he had the tube in, we weirdly relaxed and let medication and doctors run the show. My work was amazing and got us a hotel room and so after about 5 days we hit a wall and were able to take turns getting some rest. During this time we were able to meet some amazing people. I became friends with some of the other moms, and was amazed at people's optimism and faith. So many people were not only going through RSV but many of the babies had other underlying issues. We saw people who had lost babies to whooping cough, some that were being told there wasn't much more that could be done, and some that were completely in the dark as to what was wrong with their child. We met another family who's 12 year old daughter was in open heart surgery, we saw countless children with cancer and other illnesses. 
^^^ This photo literally breaks my heart. I had to take it off my phone because it makes me so sad! ^^^

After about 3 days it they did what they called an SBT (Spontaneous Breathing Test) because they thought Chance was looking better and maybe he was ready for the tube to come out. They basically turn off the machine and test his ability to breathe on his own without assistance. We were excited to hear he was getting better! After a few hours they came to tell us he had failed the SBT so we were back to worry and feeling helpless. Things like that happened all the time. We would get our hopes up then get disappointed. It was a non-stop roller coaster. Later that day they did a second SBT and it was determined they could take his tube out! I have never been so happy in my life. 
^^This is my favorite! Once he got better and the swelling went down in his face he opened his eyes and started looking and acting like himself. We were so happy! ^^

Once Chance turned a corner, he got better fast. It was so amazing when we found out we were being transferred from ICU to the infant unit, I really don't think I've ever been so grateful. When he opened his eyes I think I cried a billion tears.


Unfortunately after about 2 days there we hit another road bump. On the second night there being monitored the machine started dinging again. I assumed it was going to be his oxygen again but this time it was weirdly his heart rate. It dropped super low while he was sleeping and kept dropping to pretty low levels. We were told this had nothing to do with RSV and that it might be something completely separate related to his heart. 

In the middle of the night the doctor decided to order a test they call an EKG (or electrocardiogram) to run a comprehensive test of his heart. I was back to square one of panic and helplessness and decided to walk around the hospital. It was about 3am when I found the little chapel and basically handed it all over to God. I think I prayed harder in those 2 weeks then I've ever prayed in my whole life.


The next day things really started looking up and we finally started seeing the light at the end of the tunnel. The new doctor told us Chance was continuing to improve and look really good. They got the results back from the EKG and determined nothing was wrong with his heart, he just has a low heart rate (mine is weirdly low also so they said it could be hereditary). 

Then we got one more road bump. Andrew was so worried about everyone during this time that he literally gave everything he had to us. He didn't sleep or eat or take care of himself. He gave up any comfy spot we found to sleep for me and constantly held me all night through the countless panic attacks I experienced. He had a cough when we first took Chance in and by this point it had almost been 2 weeks since the whole ordeal started. He continued getting worse and worse, so the night before our final night in the hospital we were trying to rest and he just kept coughing and coughing and had this bright green goop in his eyes that was really starting to freak me out. He couldn't sleep and continued getting worse, so we decided to take him to the ER. Mostly I just needed him to be able to sleep, but I was also nervous that he had a pneumonia like Chance. So we got up around 4am and I drove him to the ER. At this point we knew Chance was going to be okay and so it was almost laughable at how crazy this year had been so far. After some chest X-Rays they determined he didn't have a pneumonia but had bronchitis. He got lots of medicine and inhalers and we were finally on our way back to get Chance and get ready to leave.
After one final day they determined Chance was well enough to leave. We were going home! The relief and gratitude was unlike anything I'd ever felt before. I will forever be grateful for so many things and am sure I'll never look at life the same. Going through this was a good reminder for me as to how fragile life really is. Andrew and I will forever be changed from this experience. We are SO grateful to the many people who rallied to help us through this experience. From the nurses and doctors who took care of Chance with utmost tenderness, to our families who were up at the hospital every step of the way dropping everything they had going on to bring us food, clothes, love, and support. Our neighbors rallied together and cleaned our houses, we had countless people send us flowers and gifts, and so many people who sent us messages of encouragement and love. We were humbled by the outreach and support we received and truly are so grateful.
^^Ready to go home!^^
We finally got Chance bundled up and ready to leave, but before doing so I had to say my goodbyes to some of my friends I met during my time there. It broke my heart that they were still in ICU, and I almost felt guilty leaving them. I hope to stay in touch with some of these people! 

The best part of this whole whole thing was the drive home. We left that place changed forever and developed a new love for each other and Chance that we never knew we could have. I'll never forget driving home and Andrew turns on Beyonce's "Survivor!" We both just jammed and sang at the top of our lungs, it was so funny and a moment I'll always laugh about. 


^^The day we came home. He was so better and happy we couldn't believe it!^^

When we came home I was a different mom. Never again will I be mad to get up in the night when he cries, or change a poopy diaper. There were times in the hospital where I just wanted to hear him cry. Noisy babies is a good sign in the ICU, the quiet is what is scary. 

We are so glad to have this ordeal behind us, here's to hoping the rest of 2017 goes a little smoother!  

xoxo
-steph

PS - Also in other good news, with our insurance we hit our max out of pocket in January, so bring on a whole year of free treatments!