Tonight Levi and I were supposed to spend the night at the hospital for another sleep study. If you are new to the blog you need to know that I struggle tremendously with these but both Cincinnati and Chattanooga specialists agreed it needed to happen to check his carbon dioxide output and sleep cycles now that he is off of oxygen at night.
We went in with a genuinely good attitude and the best of intentions. Last night Levi had a g-tube malfunction around 3am and I had to get him out of bed to fix it. He decided he didn’t want to go back to sleep, and we obliged hoping he would be utterly exhausted for his big sleep test.
I spent the day packing his hospital bag with his favorite blankets, stuffed elephant, books, snacks, distractions…and I even cut his hair a few curls an hour (he didn’t want me touching it so I had to be creative) in preparation for the glue mess after.
As I made the one hour drive to Chattanooga in the dark and in the rain (aka ideal car seat sleeping) I periodically threw things back to Levi to keep him alert and awake. When that stopped working I found a roll of painters tape on the floor of the van and sent back 6 inch strips and let him be as destructive with it as possible. He is really into stickers right now so this was the next best thing haha.
These photos were from 6pm. Look at that exhausted face! The room wasn’t quite ready so I let him play in the fire truck for a bit, squirting him down with hand sanitizer every thirty seconds and trying to suppress my imagination that saw millions of germs breeding within the truck. I was just so desperate to keep him awake and active.
We made it into the room and Levi made it very clear we weren’t going anywhere near him with those wires. I got him to fall asleep by 8pm and we attempted to sneak the leads and electrodes on him. We got the two bands around his abdomen and a few leads fed through his clothing and he woke up in a rage- like Incredible Hulk style. He started grabbing and pulling any wires he could reach, ripping the lone successful one off of his head. He was thrashing around like a raccoon in a pillowcase so we stopped our attempts and I tried to get him back to sleep. Obviously our trust circle had been broken so getting him calm again was a challenge.
A bit later we tried again, same results. He also started hyperventilating and that makes me nervous with his oxygen history. After 4 hours of this we had zero leads hooked up and he was wide awake and not letting his guard down.
In order for the study to be successful you have to have 5-6 hours of solid sleep, and we had to be out of the room by 4:30am. As I looked at my wild eyed and terrified son and then looked at the clock nearing 10pm I made the decision to wave the white flag and leave.
Ah yes, the familiar walk of shame. We know it all too well haha.
The specialists will not be pleased with me, but I truthfully didn’t know what else we could do differently. I don’t know that any 2 year old would gladly allow 20 electrodes, a cannula, a pulse ox, two abdomen bands, and several other leads on his body while sleeping.
On Thursday morning at 6:30am we will be back at the hospital for Levi to undergo a sedated MRI to check the extent of his brain damage. The last brain images at two weeks old showed three small spots of brain damage, likely from a lack of sufficient oxygen. The neurologist is convinced he has incurred more damage since that original scan and wanted some new images. We won’t discuss the results of the sleep study or the MRI for several weeks so for now we are just focusing on getting them over with.
Obviously Levi has developed a fear of all medical providers, and I can’t blame the kid! He has been sleeping terribly lately and tugging at his ear so I was worried his ear infection did not fully clear up and took him by the pediatrician. Thankfully the infection is gone but sweet little Levi didn’t like them looking in his ear. I got him to crack a little smile through his tears.
We have been trying desperately to keep both of the boys in a bubble as we prep for Levi’s big procedures and our trip to the NICU to deliver Christmas gifts. Thankfully our pediatrician has a whole separate suite where the sick kids go, one of the main reasons I chose that particular office.
But we did branch out and attempt a few adventures this week! Every year an organization in Chattanooga offers free switch adapted toys for special needs children that use switches. Malachi has always looked forward to this event and loves getting to shop for his toy. We tried several, including the chipmunk that made him cry last year (yep, he cried again and signed NO NO NO) and he settled on a cute little fire truck. It blares a loud siren and the wheels spin which he really loves.
We are working so hard to teach Levi how to respect Malachi’s boundaries. He hasn’t learned Malachi’s signs yet and doesn’t know to look for them. So even when Malachi tells him no he ignores him, which hurts Malachi’s feelings. We made it very clear to Levi that the fire truck was for Malachi and he could sit and listen to it but not touch it. What a trial it is for an impatient two year old!
But Malachi LOVES showing off for Levi. He was so proud to show him the toy. And poor Levi communicates to Malachi with sign language, particularly “more”, and Malachi can’t see him. They need an interpreter right now but I know it will get better over time.
I can’t even begin to describe the bond these two have. It is such a pure and beautiful love. What a blessing Levi has to grow up with such a uniquely amazing brother.
We run into a lot of other children with special needs, and seeing Levi interact with them is so beautiful. He has no fear of differences, and in fact wants to embrace and love on them, just like he does for Malachi. One of Malachi’s special buddies at church has been the victim of his laser focus and he runs over to her to shower her with hugs and kisses, touching her face and talking so dearly to her.
This weekend we went to lunch with another special friend, Lincoln. Lincoln and Malachi spent time in the NICU together, although we didn’t connect with them until a few months ago. Lincoln and Malachi play on the same soccer team. By the end of the meal Levi was climbing Lincoln’s wheelchair to sit on his lap and give him hugs.
Sometimes there are hidden blessings in this life, and sometimes there are blessings that smack you right in the face…this is one of those. Our life is teaching Levi things that I could never teach. The empathy he is developing, and the vision he is developing to see through differences is something that only experience and exposure can create. What a wonderful person Levi will be because he has Malachi in his life.
I successfully swapped out both of the boys g-tubes this week! This is one of those things I put on the to-do list and consciously look over each week. But the valves were getting a little weak and the balloons that hold the tubes in place are leaking a bit so a swap out was necessary. Malachi handled it like a champion and it was the easiest change out for Levi, although he fought me like a squirrel.
Mommy tried to shower….this was 30 seconds after I got in…
Levi went to feeding therapy…yep…his hair is covered in a variety of sticky foods…
The closer we get to Christmas Eve the more excited I am getting! This week I have watched all the pieces fall into place, a clear sign to me that God is in this. Target donated giant bags for the moms to put their goodies in. We have gathered the most beautiful little Santa hats, created by some beautiful local people.
I have written each of the moms a personal note and reminded them that they are seen this Christmas and that they are loved. We are going to spend the next few days praying over each of the boxes and bags of gifts, praying specifically that they feel the presence of God as they open each one.
I keep flashing back to the Christmas in Cincinnati Children’s with Levi. He had just had a major operation and we were living in a hotel since the Ronald McDonald House was full. The hospital had a similar event and allowed me to pick some items for the boys…I didn’t realize until after how wonderful it felt to acknowledge the fact that I was a mother of two amazing children. Looking past the medical tubes and wires and trying to choose things that little Levi might enjoy made me feel like a mom.
I pray that each of these moms can feel that same flutter of normalcy.
We have literally received hundreds of items, over $7,500 worth of tangible things! Each mom will receive about $100 in presents and a $25 Chick Fil A gift card (not included in the $7,500). We have condensed the items down as much as possible for transport but will easily fill three trucks. Then there is the matter of getting the items up to the NICU hallway to set up the tables. It is SO HARD for me to ask for help, but no matter how I calculated it it simply was not possible to do alone. I posted on Facebook asking for help and so many people have stepped up to help make this a success.
There are two off duty nurses and four former NICU moms that will be there to help restock the tables as the moms shop. Our hope is that we can connect with some of them and become a support. We have created signs for each of our NICU grads to spark some conversations about particular struggles they might be facing.
Speaking of the NICU…this week I made a trip up to scope out the area. It doesn’t matter how many times I travel that path through the hospital…it always brings back memories and emotions. There are certain areas I have to visually avoid. The windowsills I had to sit in, catching my breath between sobs. The phone I had to pick up to ask permission to go in and visit my babies. The private room that Levi was in before his transfer had a door that led to the hallway. The spot I sat in waiting for Malachi’s second brain surgery to finish. I remember staring at the elevator doors, anxiously waiting for the surgeon to walk through them.
Ironically enough, our tables of gifts will be set up directly across from those same elevators.
But as I stopped by the NICU unit this week those emotions were a bit more subdued. They were still there, but it felt like a book I read a long long time ago instead of fresh wounds. Time has healed my heart in so many ways. And focusing on this special project has helped me heal.
I even picked up that phone to drop off an early bag of gifts to one of the moms we connected with through Facebook. I recognized the voice of the clerk on the other line but didn’t give any identifying information, just told her we needed to leave a bag at the desk for a friend. Within two minutes a flood of nurses came through the doors, so excited to hear that the boys had come by the unit for a visit. I guess the clerk recognized my voice too and announced over the intercom Malachi and Levi ￼were outside haha!
Seeing those nurses was refreshing. I carry vivid memories of each of them, as they come to be like family. I can remember each of their eyes as I studied their faces so many times, trying to determine whether I should be worried. When you spend time in the NICU you become an expert at reading body language and unspoken emotions.
Both of the boys loved seeing the nurses too, Malachi in particular! He has such a good memory, part of me wonders if he remembers their voices from his stay or baby brother’s stay. The work that they do is so meaningful.
If you get time this week I want to encourage you to read Luke 1:26-38. It is a conversation we all know to some extent, the conversation between Mary and the angel Gabriel. But I never truly connected with Mary before I became a mother.
When you read it through the eyes of a mother things look so different.
Her reaction to the angel was much like mine would be. The Bible says she was “greatly troubled at his words”.
But the angel tells Mary: “Do not be afraid, Mary; you have found favor with God.”
Time out for a minute.
The angel came and delivered the news that she would go through a shameful pregnancy and birth the son of God…a child that would later die a cruel death that she would have a front row seat for.
There is a quote by C.S. Lewis that says “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”
God knows each of us. He knows what kind of person we are and He also knows the extent of the burden that each of us can bear.
What if instead of feeling troubled by the big things God puts in our life we instead choose to see them as an honor from God? What if we begin finding strength in the idea that God chose YOU for this very challenge.
What if we begin to see ourselves the way God sees us…as highly favored and capable of so much more than we even know.
But the most beautiful part of this particular scripture is Mary’s response: “I am the Lord’s servant, may your word to me be fulfilled.”
Her initial fear turned to resolute steadfastness as she welcomed the challenge with the heart of a servant. She acknowledged that her life was no longer all about her, but instead about serving the Lord, even when that path would bring pain.
Life with these two boys is a challenge- one that I never saw coming. My life right now is a polar opposite from the one I envisioned a decade ago.
But God knew I wasn’t made for the typical. He created me for something bigger and greater than typical. He created me to carry the testimony of two very special boys. He created me to walk hand in hand with each of them and move mountains in their path.
Sometimes God’s plan for us isn’t typical, and we need to embrace that.
What an honor my gift of motherhood has been.
“What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”
May God continue to cultivate my perspective as He continues to change the places I am comfortably standing. And may my heart continue to stay soft enough to gladly work for Him.