Levi is officially one week old! Well, technically 8 days old but I didn’t get to the computer in time. Here is a brief update as to what we are working on this week…
Levi’s stridor (noisy breathing) is still an issue. This video is a perfect example of what we are working with:
We know why the stridor is there from his throat scope last week. Here is a visual so you can see the irritated vocal cord, not to mention all the swelling that is not pictured, poor baby.
So typically stridors just take time to heal. We have done a ridiculous amount of steroid doses with him to try to help it heal, and each time we finish a round he sounds much better, but then the stridor comes back with a vengeance. The doctors think there is something we are missing that is aggravating the stridor. Their theory is that it is silent reflux.
So we are in investigative mode trying to determine the irritant. To check the silent reflux theory we have inserted a weighted feeding tube down his throat called a dobhoff tube that ends lower in the stomach than a normal feeding tube. This will make it much more difficult for food to make it up to the stridor if he refluxes, thus giving it a bit of a break to heal.
In addition to the stridor, unfortunately Levi’s prematurity is proving to be too rough for his lungs. He spent most of the week on CPAP on which he was absolutely miserable. Every time we had to move him, change his diaper, draw blood, etc he would scream and cry irritating his poor raw throat yet again.
On Monday evening I was explaining to the night nurse about my frustrations with the CPAP as it was causing his stridor to get worse. Just then the nurse practioner and neonatologist came in and she relayed my conversation to them. They agreed to try him on cannula again! We started to take the mask off and Levi screamed angrily, but the second the CPAP came off he went silent with happiness. It was like we flipped a switch, and he has been a different child since. He has been content and calm and I have not heard him cry a single time since the mask came off. PRAISE THE LORD!
But here is the problem…if his body tells us that it is not getting enough quality oxygen then we will be forced to put him back on the CPAP, despite the fact it angers him greatly and irritates the stridor. So that is a huge prayer request for us right now…that the levels on his TCOM machine stay in a happy place.
He did get the chance to trial room air (no oxygen support) yesterday and he failed the trial and had to be put back on cannula. The stridor and the oxygen issue are unrelated, meaning the oxygen support is simply due to his prematurity. We are hoping time will help strengthen those lungs and we can start to wean his oxygen. That is step one. As soon as we can get him non-oxygen dependent we will move to step two which is feedings. Until then he will continue to get his feeds via tube.
Levi has been acting more and more like a baby these days and even opened his eyes! Mommy’s heart melted into a big puddle. While Malachi does see, he can’t focus well on things so to see Levi look at me with such purposeful eye movements was a “first” and a very special moment.
Levi’s cultures were coming back with growth so we ran a course of three antibiotics over the last several days. His veins struggled to keep up with the potent meds and he managed to go through several IV sites, his last one giving up yesterday. Luckily we were able to find ways to give the final doses meant for his IV through his tube instead, keeping us from having to stick him again. We are out of good veins on him so we are praying that no more IVs will be needed in the near future.
We have not taken Malachi back into the NICU nor have we allowed anyone else to visit him. At this point we want to eliminate any potential for unnecessary germs. Jake stays in the Ronald McDonald house with Malachi while I spend most of my days and nights over with Levi. Friends from church and family have been taking turns staying with Malachi for an hour or so, giving Jake a brief break to spend time with Levi. It is important to me that he gets the full experience too even though he is in caregiver mode. I have been able to hold him three times now, and Jake twice!
I am healing nicely from surgery and my post op appointment went well. The doctor explained that when they started the surgery they found that in addition to the abruption, my uterine lining was dangerously thin meaning we did surgery at just the right time. Waiting much longer could have turned our delivery into an emergency situation. God has blessed me with a solid milk supply, and we are exploring going on a “dairy free diet” (via doctor’s suggestions) as we suspect Levi might have a sensitive stomach like his brother.
Malachi is continuing to sleep well which truly is a gift from God. Jake has settled into a routine with him and although he gets extremely bored each day he is handling this very well. It is SO HARD for me to not hold him. We spend a lot of time sitting side by side and playing with toys or cuddling.
Emotionally I am doing much better, especially now that I can snuggle my son. It is so hard to sit and stare at your child, waiting patiently for the two minutes every four hours that you can lay hands on him to change his diaper. Not to mention throwing hormones in the mix. Jake and I have had to process so much disappointment throughout the last five years and had to find ways to push those emotions down, put on your mommy/daddy warrior hat, and just suck it up and deal. No time for pity parties with two boys that need us…even though the temptation to throw one is impressively strong.
Tomorrow is Thanksgiving Day, and we plan to spend it as a family here in the Ronald House/NICU. Our bodies might be in different buildings, but our hearts are one and we are extremely grateful this year for the many blessings God has showered on our family.
When you go through a situation like this one you find yourself not even really knowing how to pray. Or even what to pray for. But when you are a child of God, the Holy Spirit dwells in you and the Bible tells us in Romans: “And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.”
My emotions, my disappointments, my desires and pleas…they are all being expressed to God right now. My heart is so raw with emotion and there is no doubt in my mind that God is holding my family safely in the palm of His hand. I think about the compassion that Jesus Christ freely showed to others throughout the Bible. And I think about the compassion that burns in His heart for my family, and in particular, my son right now. Even in our most difficult struggles, I hope you realize that God is in the fire with you, holding you close to Him as he guards you from the flames. There is so much comfort in knowing God.
Levi’s verse last night came from Isaiah 26:3 “You will keep in perfect peace those whose minds are steadfast, because they trust in you.”
We will try to do another update on Sunday evening. Be patient with me if it doesn’t come until Monday like this weeks. My emotions were not in a good place on Sunday evening and I needed to focus on my boys! Thank you for continuing to pray for our family. We need a team of prayer warriors surrounding us over the next several weeks.