NICU Life: Rollercoaster Update on the past 24 hours

Yesterday. It started at 7am to a phone call from the NICU, and I was a mess from there. I wanted to write yesterday but was just so drained and by the time the kids were in bed I just wanted the escape of sleep. And part of me feels bad that I keep writing and have to update you about Ryder and his bad days. I understand that a lot of my posts the past year and a half have been emotionally charged. I understand that can be draining....but this is just a part of our life right now. We are a happy family and happy people I promise (haha!)! But I do want to document everything. I know this will pass, and my hope is that someday maybe my words and experiences will be able to help someone else. Maybe they'll help you. Whether that is through a comforting sentence or simply gaining more understanding for someone who has not gone through this process...I don't know.

photo taken by Jessica Ajeman Photography

So back to 7am. I rolled over and saw it was the NICU calling and immediately knew it would be bad news. It was. Ryder’s night nurse was calling (it was about to be shift change, and she wanted to update me herself on the nights happenings). She told me Ryder had had a rough night. Not as horrible as she’s seen him have before, but he was mottled and getting pale and dropping his oxygen. He was bouncing around from the high 90s and even 100 to the 30s and 50s and 60s. Just all over the place. And it wasn’t once or twice he dropped, but consistently he kept doing it. She said she didn’t have to “bag” him ever, but did have to keep stimulating him(rubbing his tummy) to keep breathing. He was still in his open crib at this point. They (other nurses and herself) thought it looks and sounded like a respiratory problem. They tried sucking out some gunk from his throat and didn’t get a ton.

My first thought after hanging up was: “I’m just going to stay in bed all day. I’m just going to sleep this problem away. I can’t deal with this. I hate this.” But of course I knew I wasn’t going to sleep the day away. Not with Bronx and Tinley to take care of (little blessings for sure-i am so so grateful for them!). I was originally planning to go run by myself that morning, because Thursday’s are Kevin’s late start day, but I had no motivation to want to do anything after that call. I just wanted to do absolutely nothing. That lasted about 2 minutes because then everyone was awake and needing breakfast. 

I decided that no matter how crappy I was feeling I needed to still get in my workout in. For my own sanity and health. And I wanted to get the kids out of the house with me. We’ve been stuck inside because of weather and sickness (ours as well as friends!). Don't even get me started on how I’ve become sooooo paranoid about germs. Besides the kids getting watched by friends, I haven’t been hanging out with anyone. So after dropping Kevin off we went to the track and ran, did abs, and stretched. That was all good.

We came home and had lunch, then I let Bronx play a game on the Xbox while Tinley played on the iPad, and I called the NICU to check in on things. It was about 1pm now. Ryder's nurse said that he had been dropping his temp, was still mottled and just not keeping his oxygen levels up. So at rounds (10am every day) Dr Anchutes put him in an isolet and they started him on some antibiotics (cue the tears) .....Dr Anchutes thinks that the preliminary results (done about 2 weeks ago) that came back about his immune system look low, so he’s more concerned now about Ryder not having an efficient immune system. They took some blood and are running some more tests but we won’t get them back for 24hours. I asked about the other 23 weekers (there were about 4 of them that came in around the same time as Ryder), and the nurse said that Ryder definitely has seen the worst of it, and has been up and down on his oxygen the most, as well as having the most infections. She informed me that Dr Anchutes would like to talk to Kevin and I about this when we come in next.

I then got in the shower. It was a 40 minute shower of me standing or sitting there just sobbing and feeling sad for myself. I feel stupid and ashamed to admit that, but it is what it is. I sat thinking about everything the past two years. I felt so sick to my stomach. I feel it’s all my fault cuz I’ve been the one holding him. I cannot help but blame myself....he keeps getting sick from me! And then I prayed. I feel like my prayers have become so....robotic lately. I feel bad because I pray for the same things all the time: Ryder’s health and that he will gain strength is always at the top of my list. This time I prayed, I just begged. I started by begging Heavenly Father to heal Ryder. To fix him. To make him whole. I told Him that I did not want to lose another baby. I couldn't and didn't want to endure that pain again. I told Him that I just knew if he could come and touch Ryder, that his problems would go away. That I knew he could be healthy. I then felt a little sheepish for asking those things so bluntly, and I talked to Him about His will and plan for Ryder and our family. I told Heavenly Father that I knew my faith was not perfect, but that I wanted Him to help me with it. And I prayed for strength to be able to deal with whatever lies ahead. 

You know those analogies where there is a person trying to tread water in the ocean, and wave after wave keeps pushing them back under until they are so tired and you can only see their hand waving for help? Yeah that's how I felt yesterday. 

I have to insert a tender moment here, because I want to always remember it: Earlier this morning-right before we were to take Kevin to school-my Relief Society President had shown up at my door. Totally random and out of the blue. She stood there and simply handed me the cutest Valentine dish towel, and said she had seen it and thought of me. A freaking dish towel! I hadn't texted her or told her anything about what was going on with Ryder that morning...yet here she was at my door just there to show me love and support. She has seriously been the best RS President and has helped me more than she knows the past two years. Looking back now, I honestly don't know how I didn't break down and bawl to her right there. So the entire day I kept thinking about that stupid dish towel, that meant so much to me. I would tear up every single time I saw it or thought of it (obviously not stupid! you get my point!). This for sure was a testimony builder to me that the Lord sends his angels when we need them most. Listen to those quiet subtle promptings of the Spirit! Don't dismiss them!

I knew the second after I got off the phone-from that first call in the morning-that I wanted Kevin to give Ryder a blessing. Kevin has been slammed with test and quizzes this week, and has been studying like crazy. He actually was on campus until 7 that day because of a test, so we didn't go down that day(Thursday). I wish I could get Kevin to write down his feelings here! He is so good at staying level headed, but I know he just bottles a ton up inside.

I muddled through the rest of the day emotionally tired, and had a headache from crying so much. I was not a good mom. I was grouchy and snapped at the kids and then immediately apologized to them and tried to explain why I'm so sad and acting like this. The three of us knelt down on the hard kitchen floor and said a prayer for Ryder together. We then watched a movie while I got to sit and snuggle them. 

....................................................

As soon as Kevin got out of class today (Friday), we drove down to the NICU. We originally had had a sweet friend offer to watch the kids, but then Kevin and I both just decided we wanted to be with them and bring them. I went back first to do his cares. Ryder was just laying there cuddled in his isolet, looking 10x bigger than a week ago when he was in it. He barely peeked his eyes open, and I could tell he was super sleepy. I stood there holding his tiny hand, noticing how much “fuller” it felt. Dr Anchutes came by, and started talking to me about Ryder’s immune tests they did, what he thinks is going on, and what the “plan” is so far.

Standing there listening to Dr Anchutes, I tried so hard to understand all the giant words that were coming out of his mouth.  “Immunoglobulins” and “Igg” were used a lot. I will try to summarize and explain. Haha. Here’s the paper I am going off of: 

So basically, we have Immunoglobulins in our body. They are good because they function as antibodies. When your body gets sick, they are the ones that will recognize what strand of “sickness” you have, and knock it out/attack the bad cells.

The Dr had 3 things tested for, when he sent labs to Boise. They tested Ryder’s IgG, IgA, and his IgM levels. All came back fairly low. Which, on an infant is pretty normal for just being born. However, given Ryder’s history-the fact that he was born at 23 weeks, is now 3 months, and the fact that he has had 4 infections-his immunoglobulin level (his IgG level) should have been MUCH higher (because he’s had those infections already, so his body should have been making a ton of immunoglobulins to be able to catch these bad infections the next time that they make an appearance....if that makes sense). 

So Dr Anchutes talked to the endocrinologist(or immunologist...i can't remember) over in Boise about this, but also got in touch with the endocrinologist(or immunologist...i can't remember, again, blah so many things to remember) down at Primary Children’s Hospital (yes, I hated hearing that) to get a second opinion on all of this. The specialist at Primary’s thinks that Ryder definitely has something going on: a deficiency with his immune system. And wants to follow up with us after Ryder gets discharged from the NICU here. I didn’t love hearing that either.

Dr Anchutes said he is going draw Ryder’s blood to re run these 3 tests on Monday. Meaning, they’ll send them out to a lab and we’ll get the results back in about a week. And we have to wait until Monday, because the labs are closed on the weekend. They are watching him carefully though, because Ryder’s hematocrit level is already lower, and if it gets too low then they have to do a blood transfusion. Which is fine, however, they don’t want to draw blood from Ryder AFTER the transfusion, because then they aren’t getting Ryder’s pure blood. Why don’t they just draw his labs right now and then send them off Monday? Because they run the risk of clotting. Does that make sense? So it’s all a very particular process, and a waiting game right now. 

To my understanding, the hope/best case scenario here: is that these labs will come back with better readings/results, and Ryder will be labeled with Transient hypogammaglobulinemia of infancy (THI). Yeah that's a fun term. Go Google that. Okay I'll just copy and paste here: 

THI is a relatively common primary immunodeficiency disease that affects infants and young children. Following birth, maternal immunoglobulin G (IgG) is catabolized, and IgG synthesized by the infant gradually accumulates.

ahTranslation of all this? We hope his IgG levels continue to raise on their own over time. Wouldn't that be nice if this could happen overnight. Sometimes it takes up to FIVE years for these kids to build of their immune systems. 

Anyways, lots to think about. But trying not to overthink it. This THI is just one outcome. He could have something far worse....which is what I am avoiding thinking about right now. 

photo taken by Jessica Ajeman Photography