Some weeks are definitely harder than others. This was one of the hard weeks.
Earlier in the week Levi started acting a bit more clumsy than normal and became extra clingy. I hooked him up to his pulse oximeter machine and sure enough his heart rate was higher than normal telling me something was brewing in his little body. That night he stayed up all night in pain and started tugging at his ears so I got him in to see the doc when they opened. Sure enough he had a double ear infection so we started him on his ten day round of antibiotics.
Levi locked in on Malachi this week and decided that he would be his source of comfort. He insisted on being as close to Malachi as possible all week, which Malachi loved. At the doctors office he wouldn’t let us take him off of Malachi’s chair.
This morning was spent in the emergency room with Malachi. Late last night I noticed his breathing changed a bit. I hooked him up to Levi’s pulse oximeter and it showed that has oxygen was dipping much lower than his normal. The oxygen saturation goal for everyone is 100, but Malachi’s normal is 97. While he was sleeping it was dipping down to 89 and wide awake he stayed at 93. I took his temp and he was starting to drop too low, leaning towards become hypothermic so I bundled him up. Within a few hours his temp went to opposite direction and he started running a fever so I stripped him back down and decided we needed to go in and get checked for pneumonia.
He worried me enough that I decided to put him on some supplemental oxygen, but even with 1 liter of O2 he couldn’t get above 94-95. Needless to say I was very thankful that we had little brother’s equipment on hand to keep him from a late night ER trip.
I was confident they would see some cloudiness in his x-rays of his lungs and admit us so I packed my overnight bag and mentally accepted spending the night in the hospital. But thankfully while his lungs showed some junk there doesn’t seem to be any infection brewing *yet*. He tested negative for the flu and RSV, praise the Lord! Obviously he has something viral going on so we are praying hard against whatever is affecting his breathing.
This evening he is doing a little bit better and his oxygen is hanging around 95 without any supplemental oxygen. He doesn’t look nearly as sick as he did this morning so I am feeling better about the way we are headed. We will be watching him closely though!
While we were in the Emergency Room for a few hours we got to hang out with our favorite respiratory therapist Ryan. It is always so cool to me to see the look of recognition on Malachi’s face when he hears voices he hasn’t heard in awhile. He really loves Ryan and his face showed it. I am so thankful that even the darkest parts of our world have people who genuinely care for my boys.
With the boys both out of commission this week we had to cancel all of our appointments, including Malachi’s neurosugery appointment. Specialists like these fill up fast so re-scheduling happens months from the planned date. I hate missing them but also don’t want to pass any illness on to other immuno-compromised kids.
It may be the emotions of the week getting to me or it may just be mommy hormones but y’all… I cried my eyes out at a dinosaur show this weekend.
Back story: several weeks ago I saw that a dinosaur exhibit/show was coming to a convention center about an hour and half from where we live. I immediately thought to myself how much Malachi would enjoy going and hearing the animatronic dinosaurs as that is his current obsession along with superheros.
But as the week went on and both the boys weren’t at 100% I talked myself out of going. The more I tried to push it out of my mind the more it forced itself to the forefront. We woke up Saturday morning and Malachi was doing surprisingly well so I loaded him up for a mommy son date at the dinosaur show. We made the long drive and the whole time I talked up the event, building up his anticipation. He was wide eyed with excitement by the time we got there, ready to see some real dinosaurs.
The lights were dim, perfect for Malachi’s poor eyesight and he eagerly tried to look at every single dinosaur that we passed, smiling when his brain allowed him to get a glimpse at them. I narrated as much as possible to him, adding in things like “oh boy that one is looking at you Malachi!” Within minutes I felt so good about my decision to take him as I watched him with his boy wonderment.
There was a portion of the event where they had 8 giant dinosaurs that you could get on and “ride”. There was a set of stairs leading up to where you climbed on top and as I surveyed it I thought that I could easily and safely get on there with Malachi if they would let me. I went to the information desk to ask and the kind man called in to check with his manager. They told me there was a 140 pounds combined weight limit, and hate to break it to you all but I am not 100 pounds. He said they were sorry that they couldn’t make an exception but encouraged me to bring him to the dinosaur show and they would make sure he got to pet a baby dinosaur.
I was disappointed but totally understood the reasoning and started to wheel Malachi to a different part of the event. But when I looked down at Malachi he had such a disappointed look on his face. And that’s when it happened…my heart broke. Malachi had clearly heard and understood my conversation with that man and was incredibly sad that he wasn’t going to be able to ride a dinosaur. His eyes were just so sad and his face reflected it.
Seeing that look on his face broke me. I bent down and talked to him about what had happened, crying as I watched him process my words with such understanding. He was straining to see the other kids riding the dinosaurs as I talked so I told him “a secret” and said that the dinosaurs they were riding were just pretend but that he was going to get to pet a REAL dinosaur like the man had promised. He perked right up and I tried my best to stop crying as we went to get a good spot for the dinosaur show.
They had a gate/wall set up in a horseshoe shape with a tent in the middle where the “real” dinosaurs were sleeping. We found a spot right up against the fence and waited patiently. They brought out two big dinosaurs and Malachi was giddy with anticipation. They explained that the dinosaurs would walk around their side of the fence and you could pet them gently if they came close. I watched Malachi’s eyes light up at this and when he heard them getting close he mustered up all his little might to pick up his arm and lift it towards the dinosaurs. I was legitimately proud of how controlled and serious he was about getting his arm up there all by himself.
But the only problem was…he didn’t touch the dinosaur and it moved on to the kids next to him.
That was his last straw. My sweet little disappointed 6 year old lost it. He started crying uncontrollably over his missed chance to touch a real dinosaur. I wheeled him away from the fence and we cried together as I tried to mend his broken heart. I was mad at the stupid dinosaur (aka the person in the suit) for not recognizing his obvious attempt to touch it. I was mad at myself for bringing him to an event that allowed him to experience disappointment. I was mad that I am too overweight to ride the dinosaur with my son. And so I just held him close and we cried together for an embarrassingly long time.
I felt so foolish sitting in the corner alone with my son and crying about fake dinosaurs. I started reconsidering if I should even try things like this with Malachi- take him into environments where he can accidentally be excluded. Wouldn’t it be easier on his emotions to keep him in our safe bubble in our hometown?
I decided we needed to just leave and chalk this one up to a “good try” moment. I even googled Chuck-E-Cheese thinking maybe I could find one on the route home to give him a highlight for the day. But then I remembered that the man promised to let him pet a baby dinosaur. I wheeled him back over to the fence, ready to kidnap a baby dino if necessary to bring a smile to Malachi’s face.
Thankfully they were very gracious and made sure he got to touch all three babies. They even opened the fence and gathered around Malachi for a picture at the end of the show, something they didn’t do for everyone else. I can only assume they saw our tear stained faces and knew we needed a pick-me-up.
After he got to pet the “real baby dinosaurs” I let him pick out a few souvenirs and Malachi quickly morphed back to his sweet dino loving self.
He even picked out a few new accessories to put on his arm rest on the wheelchair and a tail to strap on to the back of the chair. Levi is modeling it for you.
Would I do it again? Oddly enough, yes. He really did enjoy the mommy and Malachi one on one time. And there were more things there that made him smile than the number of things that made him cry.
Malachi is getting smarter by the day. I love watching him interact with his world in his own unique ways.
So after a long, emotional week I am exhausted. Malachi and I have been camping out in the living room so he can sleep upright in his chair and baby Levi must think he is missing out on a fun party because he is no longer sleeping at night either. There have been nights this week where I have gotten a total of 2.5 hours of sleep.
Instead of hosting the youth group at the house tonight I decided to drive them into town for a meal and just some hang out time. I didn’t even realize I drove the church bus home until it was too late haha! Oops!
But in the midst of the hard stuff this week I had some beautiful moments. Every single day I came home to a stack of packages on the front porch for our NICU Christmas project. When I was planning this all out in my head I made it my goal to get each of the moms a gift, so about 70 items. But after just one week we have collected nearly 300 items and have 150 NICU friendly outfits.
I have been genuinely blown away by all the giving hearts that we have around us. As I opened each box and read each note I was awe struck…old high school friends, former teachers, complete strangers, NICU nurses. It was such a much needed reminder to me about the unique ability that God has to draw an audience for His purposes and His glory.
I read a quote this week: “Train your mind to hear what God whispers and not what the enemy may be shouting.”
There have been so many moments in my week that have spotlighted my failures. There are things that have highlighted my inadequacies and our weaknesses as a family. The devil has been shouting all week long.
But with each box that I opened God reminded me that our trials and our hard journey has a purpose. We were meant to spend time in the NICU so we could see a hurting world and bring light to it. We were meant to have special needs children and connect with other moms that haven’t yet found the hope that God brings. We were meant to write this blog and share the God that lives in us.
This week God has whispered to my heart that He has created our family for such a time as this.
I am getting more and more excited to see how God is going to work through our NICU Christmas project. I believe fully that someone will come to know Him through this. I can’t wait to see what seeds we can plant for Him to water. Be in prayer with me over the special notes I include with the gifts, that they are the exact words that need to be spoken to these hurting moms.
And please continue to pray for health in our family. Especially for Malachi’s lungs to continue to refuse any infection!
Thanks for listening to me ramble on each week. Much love to all of you.