This has been a whirlwind week as we are trying to process all of the new information we have been given. I don’t have any answers quite yet, but I will walk you through the rabbit trails we have been on.
If you haven’t already read my last post “Miracles For Levi” you may want to take a minute to read that one before continuing on with this post.
So after the latest bronchoscope and news about a tracheostomy from the pulmonologist Jake and I asked for a second opinion from a pediatric ear-nose-throat doctor (ENT). One has been consulted and has evaluated Levi but we haven’t been able to speak with him directly yet. We are hoping that we will get to talk with him tomorrow and see what he is thinking. But the ENT and the pulmonologist have spoken and in the pulmonology report he did say that after speaking with the ENT, the need for a trach is still highly likely. It doesn’t sound like we will learn anything earth shattering from the ENT.
There is a certain brain malformation that can sometimes be linked to vocal cord dysfunction so another rabbit trail we have been on is evaluating Levi’s brain. Step one was an MRI to rule out the malformation. It took two attempts to succeed with the MRI- Levi had to be completely still for the procedure and was hysterically crying the first attempt (not shocking as they strapped him in a baby straightjacket) so he had to be sedated for his second attempt. The radiologist who read the report noted a few suspicious things that needed to be investigated further so now a neurologist is involved. We were able to rule out the malformation associated with his vocal cord issues.
The second step of the brain investigation was having an EEG done on Levi. Unfortunately those results came back abnormal as well, but we are waiting to speak with the neurologist to see exactly what we are dealing with. Luckily there was no seizure activity during the EEG. But it is a little alarming that they have found some “cerebral dysfunction” as the report stated. Hopefully he will come and speak with us tomorrow. We are very curious to find out if his brain is causing any of these throat issues.
This week will be a big week for our family. We will likely be speaking with multiple medical professionals at this hospital and trying to establish a game plan for Levi. I have been researching several big hospitals nationally that are doing ground breaking procedures on paralyzed vocal cords and I will be contacting them over the next few days to see if Levi would be a candidate for surgery at each location. These places typically do these big surgeries to help remove trachs, but we would really like to see if any of them would consider doing the surgery before the trach is ever put in. It would have to involve a transfer from one NICU to another, which will be very complicated for our family, but there is no question in our minds that every avenue needs to be explored.
So essentially everything is still a big giant mystery. I am hoping to have some more answers this week so that Jake and I can start to come up with the best possible solution for our boy.
Levi is starting to gain weight, which is a blessing. He is up to 4 pounds 10 ounces and we were able to put clothes on him this week. He has had a busy week with all of his tests and procedures, and because of that we weren’t able to hold him as much this week.
He is an absolutely precious little boy. He will randomly wake up and look around quietly for up to an hour, just soaking it all in. He is fascinated by Jake and I and will actively listen to every word we tell him. There is just something so unique and special about his demeanor and when I see him listening so intently and showing so much curiosity I can’t help but think he is one special little guy. He does not act like a newborn! He also has a pretty big temper for such a little guy and DOES NOT like when they wake him up for diaper changes or procedures.
Here is a sweet little video of him listening to his sound machine:
I hate taking up blog space for Leah updates, but so many of you have been messaging me showing concern so here is a quick update…
I met with my OB on Tuesday morning and we ran some tests to check the levels of my medication. My hope was that we would be able to reduce the amount of blood thinners I am on as my injection sites were not handling it well and continuing to bleed. It isn’t necessarily painful when they break open but more of a nuisance as I am doing two injections a day (so 14 holes in the last week that are randomly bleeding). Friday I was able to meet with the hematologist and he reduced my medication slightly which seems to have helped a bit. I will stay on the injections for 3 months and follow up with hematology to make sure things are working like they should. The actual pain from the DVT (blood clot) is starting to disappear, which is a nice change.
Emotionally I am doing much better than mid week as I have been able to process things a bit. There is literally no time in the day to spend dwelling on the bad news and it exhausts me so much to do so. Instead I have to invest that energy into making the most informed and best decision for Levi.
In a day I am trying to stay by Levi’s bedside at least 8 hours (the Ronald McDonald House Rule in order to keep your room), pump for 4 hours, and sleep for at least 8 hours as recommended by my doctors. That leaves me with 4 hours throughout the day to eat, stay hydrated, get to my appointments, be a mom to Malachi, do laundry, wash bottles, shower, and research care for Levi. Juggling all of these things has been utterly exhausting, and all at a time when I am supposed to be resting and healing from my C-section. We are running on fumes. Many of you have been messaging and calling me and I hope no offense is taken when you don’t hear back from me.
We really need prayers for a burst of strength this week. Jake and I both need to be on our game for the new challenges we are facing. And we truly need prayers for wisdom and guidance from God. Please pray with us that God opens doors that need to be opened and slams shut the routes He doesn’t want us to pursue. It is SO DIFFICULT to make medical decisions for your child, and the potential for guilt down the road is monumental. So much pressure. I pray that our decision making will be black and white with no regrets and orchestrated by God.
It is in situations like these that faith becomes a tricky and difficult thing. I can remember so vividly times with Malachi where I prayed with every fiber of my being for healing…and the day after I would walk into the NICU with confidence that God had healed my son overnight, only to find out that his brain bleeds had gotten worse. As a child of God, these moments were so hard for me to process. So what do you do in those situations? What do you do when you don’t get your miracle?
Jake and I are choosing to believe 100% that God can heal Levi…in fact we declare these healings over his little body. But as we have fought beside Malachi for the last four years we have learned that sometimes God’s timing for a healing is different than our own desired timeline. Maybe it will happen tonight, maybe it will happen in several years, or maybe his complete and total healing will happen when he gets to heaven…but until that healing comes we will choose to trust in God’s plan for Levi’s life.
Romans 15:13 says “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”
There truly is a joy and peace that overwhelms you when you place your trust in the Lord.
I don’t know why God chose to not give us the exact miracles we were praying for with Malachi. And I don’t know why God hasn’t given us our miracle for Levi, but I HAVE learned that God’s plan for my boys is bigger than anything I could ever imagine. I think about all of the people that have touched by Malachi’s life and how it has given us an opportunity to share Christ through his story.
Maybe God has something SO BIG in store for Levi’s story, and getting a trach is the first big step in his testimony. Every fiber of my being prays against the complicated life the trach would bring for Levi, and we will continue to believe in and pray for his miracle. But while we wait patiently for that miracle we will continue to trust that God’s ways are greater than our own.
The week before Levi was born I sang a special at church and the words were so powerful to me…they brought out such big emotions in me and I would cry in the car when I practiced it and focused on the message. Little did I know that these words would be even more powerful as we walk this new path the Lord has placed us on. I have been singing this song to Levi in the NICU and he listens so intently to the words.
So please continue to pray with us for a complete and total healing. And for a peace that can only come from God as we make big decisions for our son. Please pray against any and all attacks the devil may try to make on our family, and for a strength to carry these heavy things we have been given.
We will try to do a mid week update this week, and we are hoping that we will have some great news to share with you.