This week was an interesting learning experience for us as we adjusted to life at home as a family of four. I am not going to lie, this has been much more chaotic than I imagined but like all other challenges we will rise to the occasion…we just may need a little more time to do so with ease. I went a little photo wild this week so bear with me.

Levi’s equipment is proving to be the most challenging part of the transition, so I figured I would walk you through it all. He is still on a very tiny amount of oxygen, so to move him from anywhere other than the 5 foot area he was in would require us to wheel two large tanks of oxygen on a cart, an IV pole that holds his feeding pump and feeds, and his pulse oximeter. I couldn’t move all of that plus Levi safely so we would move everything a few feet at at time until we got where we wanted to go. After a few tries at that process we decided that Levi and all his gear was going to stay parked in the living room and we would just make it work.

I called the oxygen supply company and they came out to put an oxygen concentrator in the house, a large machine that converts air into breathable oxygen for Levi. Attached to that large machine is a 50 foot nasal cannula, so now we can move pretty much anywhere upstairs in the house without having to wheel tanks.

 

So now when we move him from one room to another we just have to carry him and his IV pole with the feeds. It is still a challenge but not as difficult as it used to be. When we leave the house, we now have a small backpack to carry his tanks in, and each tank lasts about 2 hours. So we have to make sure to pack enough tanks to get through a worst case scenario with him.

 

We will also pack his feeds and pump into another small backpack that will go with us when we travel. Levi gets fed 20 hours a day right now and we choose when we want his 2-two hour windows to be. Obviously if we can time them with an outing we try, as it is one less piece of equipment to try to carry around.

We are doing “spot checks” with his pulse oximeter throughout the day and leaving him hooked to it at night so it will alarm if something goes wrong. The pulse ox measures his oxygen saturation and his heartrate and is set with parameters for when to alarm.

Levi definitely has his days and nights mixed up, and likes to sleep away most of the day. We are going to work at correcting this but he hasn’t been super cooperative for those attempts haha.

And he is the wiggliest kid I have ever seen. He is like a wind up toy, always moving. In this video you can also hear his current stridor. It has gotten slightly worse since we have been home, so we are keeping an eye on it. We will go back to Cincinnati next week anyway for an MLB, so unless he is dropping his oxygen saturation or working harder to breathe then we won’t worry.

We are also getting to know him pretty well and seeing his personality more than when we were in the hospital. He absolutely LOVES movement…his swing, his rocker, his bouncy seat. He does not particularly enjoy being held, especially when he is getting sleepy. But if you do hold him, it is IMPERATIVE that you master the butt pat.

Levi is a gassy little boy who spits up frequently. We go through LOTS and LOTS of laundry. A local friend signed us up for a service where a company will pick up a load of laundry off your front porch, wash it, fold it, and bring it back within 24 hours! We have had several friends donate a load to our family, and the owner of the company even agreed to match all donations! At this point, we have enough credit for three months of laundry service! Absolutely amazing and humbling.

Nights have been the most interesting challenge for our family. Malachi has been going to bed around 10:00 and gets up at 3:00. We usually stay up with him until 5:00 and if he is still awake we lay him in our bed and let him watch cartoons while we go back to sleep. Levi has been up and down all night long, sleeping no longer than an hour and a half at a time. All four of us typically end up in the living room together for a few hours each night. Our mantra this week has been “divide and conquer” and we each just take a kid, but Jake will go back to work this week and things will have to change.

Let’s talk about Malachi. Oh my goodness that little boy has melted my heart so many times this week. He understands so much more than we expected and adores Levi. We let him “hold” Levi at least once a day and he lives for those moments. He  isn’t very gentle when he is near Levi which is a concept we weren’t sure that he would understand.

He wants to be near him at all times, and even threw himself out of his seat (for the first time ever) trying to get over to him when the song “Rock-a-bye Baby” came on. I was sure he would have a black eye, as he landed on his face, and when I ran over to pick him up he was smiling from ear to ear, proud of his accomplishment to get out of his seat. I didn’t know whether to be mad at him for endangering himself or proud that he moved his body in such a purposeful manner!

In addition to being in love with his baby brother, Malachi is also ecstatic to be home. I took him to his horse therapy on Monday so he could ride his horse and we are slowly getting back into his routines. Today he and I went to church and he was in anticipation the whole ride there.

Jake put together Malachi’s birthday gift (from February) today and Malachi loves it! It is a giant swing for the front porch that is built up on the sides so he can stay in it safely.

We kept Levi in most of the week but attempted leaving twice to practice getting his gear out. After one outing I asked Malachi if he wanted to go and he said “yes” with his sign language. I asked him if he wanted to go home and he adamantly said “no” with his signs. So we talked through some options and he made it clear that he wanted to go to the park with his daddy. So of course, that’s where we went!

Tomorrow we will attempt our first appointment day with 3 appointments between both boys. It will require us to be on the road for a total of about 5 hours and thankfully Jake is off tomorrow. The rest of the week is devoted to me figuring out how to care for both boys while maintaining some level of organization and sanity. I have already stocked up on whiteboards and have them all over the house.

Speaking of medications, I was able to make it to my hematologist this week to follow up on my blood clot. I have been on blood thinning injections twice a day for the last four months and he feels relatively confident that it is safe to stop them. I will need to keep watching for new signs and symptoms of another clot but for now I can stop the medication. Praise the Lord!

Alright, time for some Leah honesty. This past week has been refreshing- mentally, physically, emotionally. These last 5 months have been brutal on me in so many ways I never thought possible. We have been through hundreds of days in the hospital with Malachi, numerous surgeries, procedures, and hundreds of appointments. But I have always been able to keep my stress under control.

I wasn’t ready for a round 2. I wasn’t ready for more bad news and for more complications with a second child. And when it hit my body just shut down. I couldn’t eat, I couldn’t sleep, and I have never shed more tears in my life. Every single day there were several moments that I came close to passing out and would have to sit down. Every single day had an undertone of lingering nauseousness. Each day I had to find a place to hide and would let the tears flow. It was a level of emotional exhaustion I never imagined existed.

I saw this video clip this week and it was eerie how unbelievably relatable it is. I don’t like being dramatic, but each and every moment in this ad is one that I have lived through in the last few months:

Being back at home has lifted that cloud off of me. I am actually getting the chance to enjoy being a mother. I am taking care of my son without a video camera watching my every move, or having to ask for permission to bathe him. I can pick him up EVERY TIME he cries, and I can spend every second next to him, attending to his needs.

So while this new life is chaos and hilariously unpredictable, I LOVE IT with every fiber of my being.

Today is Easter, and last night as I rocked my baby I started thinking about Mary, the mother of Jesus. I thought about all that I had been through, and it all pales in comparison to having to watch your son be beaten, nailed to a cross, and murdered. I have had to watch both of my sons endure some very hard and painful things, but they were all done in attempts to preserve their quality of life. I can’t imagine watching my son be put to death…

Did she know? Did she know that he had the power to remove himself from that cross, but made the decision not to? I can’t imagine the broken heart she had that night as she walked away from her son’s broken and lifeless body.

I am sure she was confused. Why would God have trusted her to carry, raise, and love His one and only son only to watch him die a criminal’s death. I am sure she was thinking that there must have been a mistake…this isn’t how it was meant to be.

But that is EXACTLY how it was meant to be.

Romans 5:6-8 “You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.”

It still blows my mind. Christ did that for you and I- as unworthy, disgusting, and sinful as we sometimes are. Sometimes we have to endure some pretty terrible things in life that are out of our control. But the most amazing part of the whole story is that Christ made the DECISION to die for our sins and did so willingly so that we could have a personal relationship with God.

Many people ask me about my faith and often wonder how I still have a relationship with God after all we have been through.

The answer is easy for me…God is good. All the time. And He desires a relationship with each of us SO much. If He loves me enough to send His only Son to die for me, then why would I ever doubt His love for me?

So even in my worst moments as I watch my children suffer, I still firmly believe in my heart that God is good. ALL THE TIME. And the things we are struggling through aren’t from Him. Those moments that the devil sends my way only push me into a deeper relationship with God.

I don’t know that I make much sense these days with my words. But I hope your take away from all this is the reminder that Christ’s death allowed each and every one of us can have a personal relationship with God. I hope that you see how valuable and amazing this gift was for us.

Both of the boys just fell asleep so that is my cue to wrap this entry up and head to bed…it is likely for just 20 minutes until Levi wakes up again, but by golly it will be a glorious 20 minutes.

Thank you for checking in on our family and for continuing to pray for us as we navigate the newness of our situation.

Much love,

Leah