Levi is 2 months old today! What a journey these two months have been.
This week was a mixture of highs and lows. I have been overcome with joy some days and heartbroken others. We have made baby steps of progress yet somehow managed to take big leaps backwards. Oh the emotions a NICU road can bring.
Let’s talk about some of the highs. Levi had a special test called a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) done this week. They send a camera down his nose and watch as he tries to swallow some food.
So rewind for a second…one of the big concerns we had when we considered doing this experimental surgery was aspiration. If they widen the vocal cord gap there is a chance that fluid could go into his lungs (aspiration). If that happened he would require a feeding tube surgery to keep his airways safe.
So back to the study. Levi passed with no aspiration! He is able to manage small amounts of liquid and his secretions very well. The next big study will be a swallow study where they will see on x-ray how he does with larger volumes of fluid. So we can’t mark the g-tube surgery off the list quite yet but passing the FEES was a great sign.
After the test showed he could handle small amounts of liquid we were able to give him a try at bottle feeding. He is very intrigued by the bottle and interested in the process. He is consistently taking about 5 mls (1 teaspoon) by bottle each time we try. Once he makes it to 10mls we will be able to do the swallow study.
Feedings are the final step keeping us here! So now on to a low…
Levi continues to throw up his feeds more frequently than we would like. Because of this he is not gaining weight, which is another thing that would keep us here. We have been trying subtle changes throughout the week with no success. Two days ago I asked them to put him on a stronger reflux med and we are also trying him on a mild formula to rule out any milk protein issues. We are desperately hoping these changes will help.
I walked into the unit this week and passed Levi in the hallway. Yes, you read that sentence right! They decided he was stable enough to move to an overflow unit on another floor! He was taken up to his own private room and I was working with social work to allow Malachi to come in with me during the week, thus eliminating my need for childcare. I felt like we had won the lottery!
Levi also got a big boy bed.
And now on to the next (and biggest) low…
He got demoted again back down to the regular NICU unit after an episode today. He got very upset and they said his lips turned blue and he went pale. We will be talking with his ENT surgeon about how to handle this after we go home as it sounds like we will need to have the option for some supplemental oxygen for times when he just can’t calm down while we wait on his airway to grow a little wider. Levi has a BIG temper- when he is in any sort of pain he panics and gets incredibly mad. If you don’t address it quickly he gets past the point of no return and will start retracting pretty hard when he breathes.
I felt like we were doing a walk of shame today as we transported him back down to the NICU. And my heart ached oh so much as we walked away from the “step before home” pod he was in.
It is more and more unlikely that we will be home anytime soon. We still have some big hurdles to jump.
Thankfully they did manage to get him into a private room in the unit; he is just so alert and aware that he never could seem to rest in the pod with 5 other babies.
He is starting to get eyelashes!
Levi is one funny kid. He watches everyone so intently. I can’t even count the number of times in a day that a staff members comments on how aware and alert he is. He loves to meet new people and has even been tossing out a few smiles this week. He gave me one tonight that just about did me in.
This was my first week without Jake and while I managed to take care of both boy’s needs (with the help of my Tennessee friend), it was so much harder emotionally than I ever expected it to be.
If you are new to the blog let me take a minute to tell you a little about our oldest son Malachi. He was born at 24 weeks without a heartbeat and has severe brain damage as a result. He is truly a miracle child and will bless you in so many special ways simply by seeing him smile, but his life does have many challenges. He is physically affected with severe cerebral palsy and does not verbally communicate but has his own signs for “yes”, “no”, and “more”. He is also very good at expressing himself using his body language.
Believe it or not, Malachi will be turning 5 years old 3 weeks from today!
Malachi has severe and uncontrolled epilepsy and has around 6-8 seizures each day. The interesting thing with him is that they are triggered by pain or discomfort, mainly tummy pain. So if he has a burp in his belly he can’t get it out himself and will have a seizure from the pressure. We still have to burp him like a baby. If we don’t get the burp out right away he will continue to have seizures until we do- and boy is he a hard burp. I can count on one hand the people who have successfully learned to burp Malachi to help prevent him from continuing to seize.
Malachi’s seizures range from small to large and the longer you leave a burp unattended the larger the seizures become. So Jake or I always have to be close by to make sure we can attend to him before it turns into a large seizure event.
Everything was working out great at the start of the week. I would leave Malachi with my friend for 1.5-2.5 hours at a time while visiting Levi then run back to the Ronald McDonald House to feed and burp Malachi. I would pump by Levi’s bedside when he went to sleep and hold him when he was awake.
We found a nice rhythm for each day but then one night the plan unraveled. Levi was inconsolably crying and I just couldn’t leave him in that state. So I stayed but it was 9pm- time for Malachi’s vital seizure and tummy medications, feeding, and burping. I rocked little Levi, sang to him, gave him his pacifier, but nothing worked. 9:30 came and I had to make the decision to leave Levi and go medicate Malachi. I had to choose one sons needs over the others.
And I felt like a horrible, horrible mother as I went down the elevator. I pulled up Levi’s NICU camera down in the hospital lobby, hoping to find that he had self soothed and drifted off to sleep but instead I saw him screaming and no one coming in to help him. I started uncontrollably crying as I debated going back up to rescue him. But Malachi’s need for seizure medications is a life or death thing and so back to the Ronald room I went, sick to my stomach and feeling like a failure.
On the walk back to the room I said to myself “It will all get better when I get them both home and in the same room.” And then I started processing this and realized that while it may be better to have them in close proximity to each other, our lives are going to be insanely crazy when we get home.
I started to do the math…Malachi has so many specialist appointments…orthopedic, neurology, neurosurgery, eyes, teeth, GI, AFO fittings, hippotherapy, occupational therapy, physical therapy, feeding therapy…and the list goes on.
Now with little Levi we will be adding in early intervention, physical therapy, occupational therapy, GI, ENT, Neurology, and the list is continuing to grow.
I know every mom that adds one to the mix has to process how to multiply her love and time to flood all the children with it. I am just praying that God gives me the strength, endurance, and grace to be able to manage such a task.
Isaiah 40:29-31 “He gives strength to the weary and increases the power of the weak. But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint.”
This verse has been running through my mind all week.
While we have only gotten to know Levi for nearly 9 weeks, I can already tell you that these boys are alike and different in so many ways. They are both incredibly nosy kids driven by any audible stimulation in the room. In fact, as I am typing this blog now by Levi’s bedside I can see his half asleep eyes peeking trying to find the source of the click clack typing. I see so many similarities in their personalities.
But they are also very, very different. And my prayers for them are also so different.
Nearly 5 years ago, when Malachi was born, I so vividly remember watching the ceiling tiles pass over my head as we raced to the operating room. Malachi’s heart had stopped inside of me. I thought to myself “I need to pray” and as my already frantic mind tried to form a prayer, the verse from Job kept popping into my mouth “The Lord giveth and the Lord taketh away. Blessed be the name of the Lord.”
I knew that there was a very high chance that I would never get to meet my son on this side of Heaven. While my heart was breaking at this very thought, I wanted to verbalize to God that regardless of the outcome I would glorify His name. God spared my son that night, and has thereby given me a bigger blessing than I could ever have imagined in Malachi. We don’t know how long our time on earth with Malachi will be- something we have to choose not to focus on- but we continue to speak that verse over his life and his health. In all situations, whether good or bad, blessed be the name of the Lord.
The night Levi was born I was fighting very hard against all of the flashbacks I was having. I saw those ceiling tiles again and grew sick to my stomach, overwhelmed with fear as I thought back to the night of Malachi’s birth. I shut my eyes tight as I tried to formulate a prayer. Instantly I thought of the words from Job, but in my heart they just didn’t seem right. As I continued to try to overcome that fear with the word of God my mouth started reciting a verse from Numbers:
Numbers 6:24-26 “The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.”
As those words came out of my mouth I was instantly comforted by God through them. I began to pray over Levi’s life, that God would shine His face on Him. I prayed that God would “turn His face” towards Levi and that Levi would reflect God to those he comes in contact with.
As I reflect back onto that verse, I knew deep down in my heart a few months ago that it was to be “Levi’s”.
Jake and I started building a house for Malachi’s needs almost exactly one year ago. As they prepared to lay the foundation we decided that we would pray and choose a verse for each room of the house. We didn’t know about Levi yet, but knew that we always wanted to try for another child. As I prayed over the children’s bedrooms this verse was laid on my heart, and we buried it under each of their rooms.
As we decorated our new house I felt led to cover our walls in scripture. I just feel so strongly that we are to hide God’s word in our hearts, and I want my boys to be exposed to it daily. I went to Hobby Lobby and the very first sign I bought for the walls had this very verse on it.
We moved into our new home on October 1st and I had Jake put it up in the hallway by the boy’s rooms; each night as I carried Malachi to bed I passed this verse. And each night my eyes and heart were drawn to it in a way I can’t describe. I truly felt the Lord tugging my heart towards that scripture each and every night before Levi’s birth.
Over these last few weeks I have watched Levi grow, and there is just something so different and unique about him. His eyes are uncharacteristically piercing and his demeanor is so unusual and special. I know every momma says this, but there is truly something so special about him.
As I look at his sweet face and I think back to my prayer over him I get a flutter in my heart…I know that the Lord has turned His face towards Levi. Already his life story reflects God and His unlimited power and guidance. God is writing a powerful testimony for him, and I cannot wait to see how God will continue to use him in mighty ways.
Each night when I have to walk away from Levi- a moment I have come to dread- I find myself reciting this verse again over him. Praying that God will give him peace.
I filmed this video tonight of Levi. We spend a lot of time singing praise and worship songs, and this one is hands down his favorite. His little eyes are so expressive as he listens:
So not really a devotional for you all tonight, but a reminder to me that God is still writing a beautiful and powerful testimony for my son. And I need to choose to give Him all the time He needs to make each chapter point others towards Him.
Please continue to pray for Levi and that his tummy issues are quickly resolved. Pray that God sends him just the right nurses to keep him calm and comfortable and that God sends the right doctors to make the right decisions regarding his care.
Selfishly, pray for me as I battle daily with discouragement and mommy guilt. Pray that God gives me the ability to meet the needs of both of my children each day. And pray for the protection and health of all four of us as we navigate a very germy world right now.
And pray for PROGRESS! Not lateral movement, but forward movement this week for Levi’s health.
Thank you for checking in, and I am hoping to be able to bring a great report next Sunday.