Preserving Normal

Last Sunday night was a reminder to me that it is never safe to relax when you have a son in the NICU. The internet connection at the Ronald McDonald House is painfully slow so I usually try to type the blog over at the hospital late on Sunday evenings. I spent some good quality time with Levi then found a quiet spot in the waiting room to type an update.

Honestly, it was the happiest I had felt in a long time. Levi seemed to be improving so well from his surgeries and he was sounding better than before with his breathing. He was down to a half a liter of oxygen (the cut off for what we could officially go home on per protocol) and aside from being whiny and wanting to be held, he was doing SO good. We were going to meet with his doctors the next day and I was just so confident that it was going to be a productive meeting.

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I felt like so much weight was lifted off of my shoulders that night as I walked back over to the Ronald McDonald House at midnight. I was mentally preparing what I wanted to discuss at the care conference the next day; I was also looking forward to a full night’s rest- something that is only possible the nights Jake is here and can get up with nocturnal Malachi. I climbed into bed…then 30 minutes later the phone rang.

It was the hospital staff telling me that Levi was extremely agitated and didn’t want to be put down. He had been like this since his surgery so I wasn’t too alarmed, but they said that they didn’t have anyone there who could hold him continuously as they all had other babies they had to take care of. Levi was supposed to have a blood gas drawn at 4am to measure the carbon dioxide in his blood. If he cries that number goes up, and with such an important meeting on Monday I wanted to make sure that he had the best carbon dioxide level he could.

I got dressed again and headed back over to keep him calm. We rocked and played until he fell asleep, just in time for his blood gas. His level came back GREAT and he was sleeping so well that you couldn’t even hear his stridor. I felt like high fiving myself as I walked back across to the Ronald McDonald House. I climbed back into bed around 4:30 and fell back asleep.

Then the phone rang again. Ugh. There is nothing that makes your heart skip a beat more than those phone calls that show up as “Cincinnati Childrens”. We have had dozens in the short time we have been here. It was just after 7am so in my head I was thinking that surely nothing major could have gone wrong in the last 3 hours.

The resident told me that Levi’s heart rate had shot up to the 220s (his normal range is 130-160) and was working harder to breathe so they put him back on high flow oxygen at 4 liters. I kept asking “What happened? What was the trigger?” But no one seemed to have pinpointed it yet.

This is the 4th weekend in a row that this exact same sequence of events has happened. This time was no different as they cycled through the possible causes:

Chest x-ray- came back clear

Blood cultures- clear

CBC to check white blood cell count/possible infection- clear

Stop his feeds and start an IV (which took 3 tries)

Catheterize him to check for urinary tract infection (something I would not allow them to do this time because it always comes back clear)

We have watched the same exact sequence of events happen EVERY WEEKEND. Jake and I had even joked that we had made it through a Friday without the above sequence being done. We spoke too soon.

When they put Levi back on high flow oxygen it makes him even more agitated and increases his heart rate even more. And stopping his feeds makes him hungry and leads to more agitation. So the things that are meant to “help” actually make things worse. It makes it difficult to pinpoint the reason why he is so worked up.

BUT luckily this go around we were able to figure it out pretty quickly. Levi’s g-tube had key holed, meaning the extension tube had been taped too tight and pulled the button over, opening up his incision. Feeds and gastric juices were literally pouring out of his little body. He was in so much pain and his body had used up it’s reserve.

We started him back on pain meds and kept his belly empty until late Thursday to allow the incision to heal. It looks much better and he is acting more like himself now that he is getting a small amount of milk back in him, and we should be able to get back to full feeds by the middle of this week. We were able to wean his oxygen down to 1 liter and he has been doing well with his breathing.

That small setback was like a sucker punch to the gut for me. Every time we start getting some momentum BOOM. I was an emotional mess as I watched him yet again go through these interventions. I have zero desire to watch my 8 pound son attempt to get an IV placed. But I also feel like he needs me there to keep him calm and feel safe, so I hold the pacifier or I hold his little hands still as they poke him. And I watch his big, sweet eyes fill up with tears as the pain registers. And we do this over and over, because each time they get a vein it collapses. It never gets easier to watch your child go through painful things.

By lunchtime Monday Levi and I both were covered in his blood, vomit, tears, and stomach juices. I felt like I was going to pass out and needed to get ready for our important meeting. I was running on the 3 hours of sleep I had gotten the night before, and I was feeling so defeated. I shamelessly trudged through the hospital with my red, blotchy tear stained face and my bloody hands and went to my Ronald room to have a good cry and a shower. But even that couldn’t last as long as I wanted it to, as I needed to get back to the hospital within the hour for our patient care conference.

The care meeting went well. In addition to Jake, Malachi, and myself were Levi’s ENT surgeon, his neonatologist from the week before, his neonatologist who was taking over his case for the upcoming week, a fellow, a resident, and the social worker.

The first question we asked was to his ENT surgeon. I asked her if Levi was considered a success or a failure for the experimental procedure. She said that he is neither, but what she would call “marginal”. She explained that at baseline Levi would be considered a success. But he is walking a tight rope of success and tiny things bump him off quickly. For example: vaccinations, surgeries, pain (as we saw that morning). So the procedure was “successful” at opening his airway like we had hoped, but we are still trying to find out if it was enough to keep him completely safe. She reminded us that he was hands down the smallest to have this new procedure done, so we are all watching hopefully that it will work.

While we would like to pretend that we can keep him from any and all triggers, pain is the one that concerns us the most. What will happen when Levi starts teething and gets worked up? Will that tip him over the edge and cause him to work harder to breathe? What if he is learning to walk and falls hard? Will that moment of panic cause him to not be able to catch his breath? We have to make sure he is completely safe in order for us to bring him home trach free.

The ENT surgeon is still hopeful that he may be “safe enough”, especially if we bring him home on oxygen as a back up plan. He doesn’t need it when he is calm, but we like the idea of having the option to turn him up if he gets upset.

We then shifted the conversation to the NICU staff. We talked about how sometimes the interventions they do with him are necessary (like when he drops his oxygen), while other times they are not necessary (like when a nurse “thinks” he looks like he is breathing too hard when actually he is at his baseline). The only way we are going to be able to evaluate Levi’s safety is to let him show us what he can and can’t do. So instead of intervening so quickly and throwing him back on high flow, we need to do less invasive steps to see if we can keep him from escalating so quickly.

For example, at the first sign of any pain/agitation he needs to be given Tylenol. And maybe we will need to bump up his oxygen percentage slightly. Then if things continue to change negatively, bump him up a liter. But any and all interventions need to be slow as we are still evaluating what he can safely handle.

The NICU docs explained that while they would try hard to do that, we need to be patient with them as this is going to be very difficult to do. They said that in nursing school they are trained that if they hear stridor like Levi’s they are supposed to intubate immediately! So to hear his breathing and see him pull a little at his ribs and neck tends to cause them to want to intervene. But the ENT surgeon said it best: “We can’t strive for perfection with Levi. We are looking for him to be just safe enough to go home and grow.” The only thing that will help Levi’s airway now is for him to go home and get bigger as the airway will also get bigger and widen the gap between the vocal cords.

So the plan is to allow him to completely heal from his g-tube issue and get back to full feeds. Once that happens we will give him a few weeks to show us what he can do without any triggers messing with him. If he passes the test, we will talk about going home with some oxygen. If he doesn’t we will have to put in a trach for at least one year. At the one year mark he would require another surgery to put a bone graft from his rib in between his vocal cords. If that surgery worked he would then get the trach taken out.

We are also hoping that Levi is part of the 50% whose vocal cords “wake up” and suddenly start working again. What a blessing that would be!

Overall the meeting went very well and for the first time since we arrived, I felt like everyone was finally on the same page. While our plan is still ambiguous, at least we had one. Then this morning the tone seemed to change a bit…

This morning I was able to make it to rounds and the neonatologist told me that they (8 of the neonatologists) had a meeting on Friday where they discuss all their complicated kiddos. She said that Levi was discussed at length and they all agreed that he was not safe to go home without a trach. She didn’t even think that he could safely ride in the car home to Tennessee. I was a little disappointed to hear this, as I thought we were all going to keep an open mind while we watched him for a few weeks.

And this is where we are torn. The ENT surgeon who has done/witnessed this new procedure 21 times is telling us that she is feeling confident that he may be “safe enough” place to go home. But the NICU is telling me he is not even remotely safe. I do not want to trach Levi until I know it is absolutely the last option on the table. I definitely don’t want to trach him if it is not entirely necessary per ENT. But how in the world will we ever get discharged if the people who would make that decision feel so strongly he isn’t safe.

Levi is breathing the absolute BEST he has ever breathed! His stridor and retractions are still there, but they are expected to stick around for years. I video document Levi throughout the week so we can have comparisons. Here is one I took today while he was sleeping. If you have been following us for long, you will be shocked at the marked change in his breathing:

He only sounds this quiet when sleeping, but it is still a huge improvement!

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During Monday’s meeting one of the doctors said a phrase we have heard so many times since we have been here… “It isn’t fair to you all to send him home with such high needs.”

I can’t help but laugh inside when I hear these words…especially when I am have a 40 pound 5 year old special needs son balanced on my lap. I shook my head when she said this and said, “It doesn’t matter what is fair or unfair. This life is no longer about us… it is about our boys. What you need to understand is that we chose this life, KNOWING that it would require sacrifice and selflessness. We had the opportunity to let Malachi pass away, but chose life for him, fully aware of what that could mean for us. And I know it may not make sense to you, but we are unbelievably content with this life we live- in spite of how miserable it can sometimes be. We don’t feel that our life will be cheapened in any way with adding Levi as he is into our routines, chaos, and uniqueness.”

I explained to them that we aren’t making these medical decisions based on a fear of trachs or a fear of our son looking different. If any family can handle the device management and the stares from strangers it is us. But this entire journey that we have chosen to go on is simply driven by our intense desire to preserve Levi’s “normal”.

We knew before Levi was even born and these issues were known that he was not going to have a normal life. No matter how hard we could try, Levi’s life will always be different than his friends because he has a brother like Malachi. While Malachi will bring SO many blessings into Levi’s life, he will also bring things that most siblings don’t have to deal with- surgeries, doctor appointments, diaper changes, hospital stays, wheelchairs, and the list can go on and on.

I get choked up even typing this, but we will have to have a conversation with Levi about how his brother might need to go be with Jesus before we want him to. In our world, this is a reality. One we often stifle and try to ignore, but one that is always present in our thinking.

While we will always teach Levi to embrace and take pride in Malachi’s differences, and while we will show and teach him about unconditional love and kindness, there is such a strong desire in Jake and I to preserve his normal. And if that means trying a surgery and staying in a hospital for several months then it is a gamble we are willing to take.

Let’s pause and watch this amazing video of Malachi playing with his car. Seriously y’all…look at the progress he has made with his fine motor abilities!!

I feel a little like I am in some weird parallel universe. I have these memories of a beautiful new house, a closet full of options, a fridge full of food just steps away, friends, routines, and…control. I remember bath robes that I bought for “breastfeeding after I had the baby”. I can picture the organized baskets of clothing in Levi’s room, and the baby swing washed and ready for him. We had it all planned out. Now I think about that basket of clothes and realize that I won’t be able to put him in most of them as they won’t accommodate his g-tube.

But the longer we are here the more those memories fade and are overtaken by the events of the last few months. When I think about home it feels more like a place I read about once. I can’t even imagine how it is going to feel to get all of us home to Tennessee and back into that world.

Being at the Ronald House has been such an interesting experience. This week the local zoo brought animals for the kids to see and touch. As the event started I looked around at the several families around us and couldn’t help but smile. In a world where we are a minority with Malachi, we were now the majority. No one stared, no one whispered, no one pitied us. It was so oddly refreshing. And everyone used hand sanitizer liberally haha- something we often get made fun of for. But to be fair we are a little crazy with it. We even have a bottle we leave in our church pew each week.

There was also an African drumming band! I wasn’t sure how Malachi would handle the stimulation of the drums, but I thought we would give it a try. His reaction was priceless! Here is a video for you:

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Unfortunately we were only able to stay for a few minutes as it did set Malachi into a seizure.

Levi’s great grandmother was able to come for a visit this week, which was such a special experience for the both of them!

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I have been thinking long and hard about what devotional thought to share this week, but I am a frantic mess right now…I am writing this entry in the lobby area of the NICU and the alarms just sounded for a baby who coded a few rooms down from Levi. Their rooms start with the same letter, and even though it wasn’t his I am literally shaking and nauseous.

But here is a verse that has been pricking my mind this week. I love the concept of godliness WITH contentment…it takes both for the recipe to work.

1 Timothy 6:6-8 But godliness with contentment is great gain. For we brought nothing into the world, and we can take nothing out of it. But if we have food and clothing, we will be content with that.

Alright, this momma has to go and check on her baby. Much love to you all!

God bless,

Leah

 

 

5 thoughts on “Preserving Normal

  1. What a week! Praying for your sweet Levi to be able to experience normal in all the ways you are desiring for him. ❤ Praying that God prevents the triggers from beginning anything adverse for Levi.❤ Praying for God to give you and Jake the wisdom of Solomon in the decisions you must make in the lives of both of your boys.❤ Praying for godliness with contentment, a beautiful goal for all of us who love Jesus.❤ Praying for you and your precious family to come home to Tennessee, where you are so loved!❤

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  2. As I read this week’s blog entry, I am overwhelmed with emotions: sadness at the continuing setbacks; frustration at the turnaround by the neonatologists; excitement at the progress Levi is making; joy at seeing Malachi laugh, smile and play. It is so easy to be swayed by these emotions, like a ship on stormy seas. Yet our Heavenly Father is constant; always there, always faithful, always loving us. How wonderful that in the midst of the constantly changing circumstances surrounding Levi (and Malachi), God never changes. He is our rock, our anchor, our strong tower. I am praying that you will experience God’s love deeply today; that you will soar on wings like eagles, that you will not grow weary as you walk this road toward bringing Levi home. May our Lord and Savior bless you with every good gift today. ❤

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  3. God bless your beautiful sweet soul! There are no words! I am praying for you all and Levi’s healing but I will target prayers at his vocal chords coming to life! In Ezekiel 37 the Lord commands Ezekiel to prophesy life and so I will!!! I prophesy life in to Levi’s vocal chords!!!! May the Lord send angels to minister to your family!!!

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  4. Leah,we have a 40 year old special needs daughter.She is at home with us here in Benton.She has a sister that is 18 months younger.All of Autumn’s friends accepted Brandi as one of their own.They would get in bed with her and tell her all about school and their boyfriends.Brandi would just laugh with them.Out granddaughter,Bella,who is 11,is great with Brandi.Since she always been around her she has compassion for all people with disabilities.If you would ever need or like to talk,Renee Maples has my number.Your family is in my prayers daily.

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  5. Keep fighting, Leah. So humbled right now to have a baby boy that gets to be “normal” without a second thought. I have been following Levi’s blog, and I feel so invested in everything that happens to him. I celebrate his strides, and feel sick when you share bad news. Thank you for allowing outsiders to be part of your journey. You guys have a cheering squad in Charleston, SC!

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