Oh my what an exhausting week we have had. Be prepared for lots of information and a ridiculous amount of pictures. When we get locked in the house post op I find lots of opportunities for photos!
Here is a snapshot of the number of syringes we are going through in ONE day between both of the boys medications right now:
Surgery Day: I checked Malachi in for his surgery at lunchtime on Monday. I told Jake that my goal was to make it the whole hospitalization without shedding tears, and I came soooo close.
The time came for the dreaded hand off- the moment where I hand my sweet baby to a stranger, knowing they are about to take him to a room of pain. God blessed us with a special treat- one of Malachi’s NICU nurses is now working in the operating room and was able to take him back and be with him for most of the surgery. She messaged me later and told me he was a ham back there making all the nurses laugh.
I went back alone to my holding cell. If you have been with us for awhile, you will understand my joy about having a room with a door! And I waited. The phone rang several times with updates, but the second time was the disappointing news that they attempted the laparoscopic route and it did not work. That meant they had to start over and do the surgery through an open incision. The surgeon came in after the procedure and seemed as disappointed as I was that he wasn’t able to do the less invasive route. I said “Well, I am not surprised as we seem to be a worst case scenario type family.” And the surgeon replied “That’s exactly what I told my resident…if something can go wrong, it will with this kid.” Even the surgeons acknowledge our knack for complications.
After a relatively easy recovery room experience thanks to pain meds we settled into a room. They took off the dressings to take a look at the surgery sites and my stomach dropped. Not only were there two small incisions from the laparoscopic attempt, but there was another 4 inch incision right in the middle on his stomach. And then there was the g-tube….Levi has what they call a mickey button. It is a small button that sits on his stomach that is about the size of a penny. You hook extension tubes to it to put his food in and when it is not in use you can unhook the extensions, close the lid, and no one would even know it was there! Very low profile and relatively flush on his skin so you can’t see it through his clothing.
They were unable to put that style of tube in Malachi and instead put in a HUGE mechanism. The button is 3 inches in diameter with a tube sticking out of the middle of it that stays on there 100% of the time that goes down to his mid thigh. My heart started to break for Malachi as we always try so hard to preserve his normal. We genuinely hated doing this surgery but knew it needed to happen. But this device was never what we had in mind. This gives people something to say “Ewww” over as they see a clear tube hanging out oh his stomach with stomach juices inside of it.
Yep- I cried over that stupid tube.
I would show you pictures, but it is not a pretty surgery site right now and it had to be sewn onto his stomach. Thankfully we are told we can switch this tube out for a mickey one in 6 weeks.
I can handle a whole lot more than I ever realized but something that has yet to get easier for me to handle is wounds. Wound care is my weakness, and I can’t tell you how many times I have dry heaved in the last week trying to keep everything clean and healthy looking. Stomach juices are a close second, which doesn’t bode well for a g-tube (x2) momma.
We had really hoped that this recovery would be an easy and simple one but unfortunately it is not going well at all. Malachi is in a lot of pain. We were discharged on Tuesday afternoon and kept him heavily medicated for several days. On Thursday we noticed his breathing changed a bit and wondered if the pain medications were slowing his rate. To check our theory we weaned him to basic Tylenol and Motrin which did help his breathing rate but then Malachi started running moderate fevers. The pattern has been the same since Thursday: Malachi starts running a fever, we medicate him and it breaks after a few hours, 24 hours later it returns.
We have been communicating with the surgeon as well as the pediatrician and unfortunately since it is the weekend there isn’t much we can do other than take him to the emergency room. I asked the pediatrician if they would call in orders for a chest x-ray to check for pneumonia and a CBC to check for infection but they said they were not comfortable doing that without laying eyes on him, which they can’t do until normal operating hours tomorrow.
This is where the parent struggle comes in. His immune system is so compromised. Yes, we could take him to the ER but I can almost guarantee that Malachi will contract something worse in there, and likely bring it home to Levi. We are told that when Levi gets any airway sickness to expect an ICU stay on the ventilator. Taking him to the ER would endanger both boys so we are trying our hardest to get through the weekend without going that route.
Obviously Malachi’s safety and health comes first so we have been checking his oxygen saturations on Levi’s pulse oximeter, breathing rates, temperatures, and charting it all. We still think he is in a safe range, but definitely want to get him in tomorrow to check things out. Post op fevers are pretty common, but we feel like he has something respiratory going on- it could be an upper respiratory infection he picked up in the hospital but it could also be post op pneumonia (he gets intubated during surgeries) which needs to be treated. Please pray with us that we can avoid a late night ER trip tonight and that we can get answers and treatment in the morning. And pray for Malachi’s comfort- he has just been so miserable this week.
I was able to get a few smiles out of him this weekend during our fever free times.
During our hospital stay we were able to see a lot of friends- I actually started laughing this week as I reminisced over all the people that stopped by while we were there…former nurses, college friends that became nurses, a local friend with her own warrior in the ICU…
One of our surprise visitors was Malachi’s neurologist. He saw that we were inpatient and came to give us the good news that they had officially been cleared to start prescribing Epidiolex, the first FDA approved cannabis-based drug. It has been doing wonders for children with intractable (uncontrolled) epilepsy like Malachi, so this was amazing news. Malachi will be one of the first patients to try the drug at our hospital! I have been dealing with the paperwork and phone calls and it looks like we will be able to start it next week. We have tried CBD oil in the past and it has definitely made a difference in his tone, seizures, and sleep habits.
We were able to deliver our “Blessing Box” to the NICU on Monday before surgery! In the end we collected enough donations to donate 144 cards, each handwritten and filled with a $20 Target gift card and a $5 Starbucks gift card. There are instructions on the top of the box to give a card to a long term NICU mom that really needs some encouragement.
I know I have mentioned this before, but God told me that each one needed to be handwritten. I was able to write nearly 50 of them but it took me 1 hour to write 8 cards….at that rate I knew I would not be able to finish before New Years. Thankfully several friends willingly took stacks of the cards and wrote the message for me. It was a good reminder for me in allowing others to help carry our burdens and help where they are able.
I prayed over each card the night before I delivered them to the NICU- it was a good distraction from the day looming ahead of us. I prayed that God’s purposes would be fulfilled with each card, knowing that this project was His doing and not mine. There is something so exciting about obeying God, even when you don’t quite see the whole picture.
There are reasons for everything God asks us to do. I don’t know why these needed to be handwritten, and I may not ever know but remember that the details matter to God. Sometimes His plan is bigger than the sacrifice of time He requests from us. And what we see as menial tasks are just catalysts for something big He is about to do.
And just like the Bible story of the 5 loaves and 2 fish, never underestimate God’s ability to multiply. I am the boy in that story, with a tiny gift that was offered. Jesus takes our tiny gifts and creates miracles in the lives of others. What tiny gift are you able to bring to God to become his instruments?
When things are done through a heart like His, a heart of true compassion, He will supply your every need.
On Wednesday I had a friend request on my Facebook account and saw that the woman in the profile picture was holding a preemie. I clicked on her profile and she had posted this:
I was amazed that somehow she had found me, as I had not given enough details for her to be able to track me down. To keep them personal, I simply put that I was mom of Malachi (a 24 weeker; 112 day NICU stay) and Levi (34 weeker; 131 day NICU stay). But a mutual friend had seen her post and knew about the project we were doing so she tagged me in it. It blessed my heart to see that God was already using these cards to lift up spirits and point these discouraged mothers towards Christ.
It is so much fun to watch God work.
Let’s talk about Levi. I don’t know if his antibiotic has fueled his wild side but he has been a bundle of energy.
This is his new favorite game in his car seat. He rocks himself so hard that it gets stuck propped backwards. But don’t stress, he can get himself un-propped. Y’all, he is WILD.
He also had his first tooth finally break through this week! Oddly enough he is getting his top front teeth first. Pretty much everything he gets a hold of goes into his mouth these days.
Levi sure does love his daddy, but this week we hit a HUGE milestone and he started calling for MAMA! I left for the hospital with Malachi and sure enough Levi started calling out for me while I was gone. This is a very big deal for two big reasons: 1) I have never had a child call for me 2) This is the boy who we were told might not have a voice I was able to get it on film to share with you all…
This week has been a very messy week as both boys have discovered their feeding tubes have lids that pop open. Looooots of laundry and lots of baths. The day we came home from the hospital I went into the kitchen to put dishes in the dishwasher and when I turned around Malachi had a mischievous grin, which was a surprise since he wasn’t feeling well. I walked over the find he had a death grip on that stupid extension tube and had popped the lid off- he was now sitting in the 8 ounces of food we had just put into his belly. YUCKKKKK.
And lovely little Levi has done that very same thing tonight 3 different times in the last two hours. Messy, messy boys.
On Friday I was giving Levi a much needed bath and had him stripped down on the bath mat. He looked very seriously at me and whispered “Mama” slow and creepy like and as I quizzically looked back at him I felt the warm sensation of his pee stream hitting my leg. Lovely. He was highly amused and I couldn’t help but laugh.
Alright, so let me be real and raw for a few minutes. It is weeks like these that I realize how fragile I am. In my head I am tough as nails, but my heart knows that is just something I tell myself to keep it from breaking. The inside of me is a very weak mother who carries scars from seeing her boys struggle over and over again.
On Thursday I had to consciously avoid looking at the chair I sat in when the pulmonologist told me Levi’s vocal cords were paralyzed and he would need a trach.
That parking space where I sat in the car and sobbed uncontrollably one night when we almost lost Malachi.
I avoided eye contact with the sleep study tech as we passed each other in the hallway, but seeing her brought a wave of nauseousness as I remembered all the discomfort Levi was in that night and how we were about to have to do another one in December.
I had to walk on the left side of the hallway, remembering the hundreds of times Jake and I walked to the right in that hallway during Malachi’s nearly 4 month NICU stay.
I tensed as they looked up what room we would be sent to, knowing that the ICU is on the 4th floor- we know that floor so well. But also knowing we have spent weeks on the 3rd floor as well, and praying that we wouldn’t get one of those rooms where the memories would be able to creep in.
When I went into the bathroom while Malachi was in surgery I caught a glimpse of myself in the mirror and flashed back to a tear stained Leah face that I had seen in that same mirror dozens of times before.
There are triggers everywhere. They are literally unavoidable in that place. And while I used to be able to mentally push past them I am losing that ability. This was surgery #34. Stress is starting to impact me physically with full body stress rashes, hives, vomiting, and the inability to eat. I feel like I have been at war.
Even being home from the hospital this week I have had a difficult time, getting nauseous each time Malachi’s fever comes back, knowing that I am possibly going to have to take him back to that place. These feelings have nothing to do with my discomfort, but rather the pain I feel for them.
In my weakness, mentally I have been allowing thoughts in that don’t belong. This week I was flipping through pictures on my phone and I paused and thought “What if this is the last picture I will ever take of Malachi?” In my heart I know these thoughts are not healthy, but I haven’t been able to succeed at pushing them out of my mind.
If you haven’t already picked up on this, I am a control freak. And not being able to control the outcome of anything medical for my children is very devastating for me.
When I start to feel like I am drowning in these thoughts the warning lights quickly activate and I know I need to stop them quickly. I always try to refocus by thinking about our family verse, Philippians 4:8:
“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”
I felt a breakdown coming on while I was in the room waiting to hear from the surgeon about Malachi. As I tried to refocus my thoughts, something popped into my head…
We chose this life. Why should I mourn over something that I chose?
We could have avoided all of this stress, this pain, this heartbreak. When Malachi was just 3 days old we were given the chance to discontinue his lifesaving care. But we both so firmly felt that we were to choose life for our son, and that his time on earth was to be decided by God and not us. We asked them to save our son that day. They presented us with the likely outcomes for Malachi with the extent of brain damage he had suffered, and most of those predictions have rung true.
We could have tried again for that easy life we dreamed of…that problem free baby. We could have made the decision to give Malachi his heavenly body and spared him this challenging life. But we felt so strongly in our hearts that God had work for him to do here on earth first…regardless of how “imperfect” he might be. God has a gift at working through the things that we see as broken.
Every day of Malachi’s life, even the hardest and darkest days, has been a blessing.
If we could go back to that room and have that same conversation again knowing all that we know about Malachi, we would choose this life again and again. Our Malachi is a world shaker. He is a life changer. He is a glimpse of God.
“Blessed are the pure in heart for they shall see God.”
Through Malachi we have been given the privilege of sharing the very reflection of God’s love with the world. The joy of the Lord flows through him. Malachi is loved by God, and is His beautiful creation.
We were given a very special gift this week from someone whom we have never met. She had read about my sadness at never being able to get a really good picture of Malachi as he usually turns his ear to the camera instead of his eyes (he is legally blind but can hear very well). She sketched this beautiful picture that brought tears to my eyes and gave me chills.
We chose this life, and we would choose it again and again and again. Can you imagine a world in which Malachi had not lived?
We choose you again and again, sweet son. You have already impacted the kingdom of God more in your 5 years of living than most get the opportunity to do in a lifetime. You are a vessel for the Lord and what a blessing God has given to us in you.
Please join us in prayer this week for healing and comfort for Malachi’s body. Pray that we are able to find answers and treatments in the least germy environments we can. Pray for wisdom, as that is always a need in our parenting choices with these boys.
Thank you for being a part of our journey,