This week will mark our 10th week in the NICU with Levi. Just for a little bit of perspective, Malachi was born at 24 weeks and had a 16 week stay. Little Levi was born at 34 weeks and is creeping up on big brother’s record. At the rate we are moving, we are expecting to be here several more weeks.
After Levi’s last throat procedure, the ENT surgeon gushed about how good his airway looked. She explained that even though he still had a stridor (noisy breathing) and some retractions (his belly pulls in when he breathes) that he looked exactly how they expected him to. She said from an airway standpoint he was cleared to go home and simply work on growing.
Obviously we couldn’t go home yet from a NICU view because little Levi still needs to learn how to eat, gain some weight, and be completely stable. He had never been given the chance to take a bottle because it wasn’t safe to have him try to breath and eat at the same time.
As we focus on reaching these goals we are hitting a little bit of resistance with the NICU as they are all extremely concerned about his airway; they are uncomfortable with feeding him based on his breathing status (the stridor and retractions). So we seem to now be in a washing machine cycle and not really making any progress.
This has been an emotionally exhausting week for me as I try to convince each team working with Levi that he has been deemed “safe” by the ENT surgeons as well as formal tests (like his FEES from last week). I have explained to them that if they wait to progress until he is no longer stridoring that we will be here for months, and if that is their intention then we need to discuss feeding tube options. Being in the NICU an unnecessary amount of time while we wait for him to grow is not in Levi’s best interest. Period.
At the request of the NICU, the ENT surgeons are going to do another bronchoscopy procedure on Tuesday to take another look at the airway. I have requested a patient care conference so the surgeons can tell the NICU team exactly how they feel about what they see.
BUT let me focus on the progress we HAVE made this week…
Levi has been allowed to try the bottle with therapists throughout the week with very small amounts of milk (5mls which equals 1 teaspoon). He is catching on very quickly and his trial amount was bumped up to 10mls yesterday and tonight he blew me away by taking all 10mls (bottle fed by mommy) in under 10 minutes. He was ferociously wanting more but we aren’t allowed to yet. I am hoping tomorrow will be just as successful so the team may be able to do a swallow study before Tuesday’s procedure.
The switch to formula and change in reflux meds seems to have been the missing piece and I am so happy to tell you that Levi is throwing up only 1-2 times a day! And since he has been holding his feeds down he is gaining some serious weight. He is up to 6 pounds 9 ounces, which is two pounds more than his birth weight.
I have officially stopped pumping and am now trying to decide where to donate my Ohio milk. Last night they told me I have 14,000 mls (just under 500 ounces) in storage! Our Tennessee stockpile is nearly twice that amount! But I can’t be upset about it; I am just happy we found something that works for little Levi’s belly. There are several online sites where I can find people that need donated milk, and I can also possibly donate it to the NICU but will have to go through many steps (interviews, physicals, bloodwork, etc) before doing so.
He did throw a bit of a curveball at us this week as he is starting to have more bradycardia episodes, which we call bradys. This means that randomly when Levi is falling asleep or sound asleep his heart rate will drop below 100. What is odd about Levi’s spells is that he will dip down and come right back up and repeat this cycle several times in just a few minutes. His oxygen level doesn’t change, just his heart rate. And he recovers completely on his own without a nurse having to wake him up or stimulate him. I am posting this video below in the off chance that any nurse friends reading this have any ideas:
I am hoping it is something easy like silent reflux and maybe us thickening his food will help eliminate these bradys. They will not discharge us as long as this continues to happen.
Other than that nonsense, he is having a great week. Jake’s school was closed every day this week due to the winter weather which was such a blessing! I had lined up babysitters for Malachi expecting that he would have to drive back to Tennessee so we took the opportunity to go and visit Levi together, something we have not been able to do since Christmas. Our first visit together this week Levi was sound asleep and we hovered over him like weirdos until he woke up. He looked at me, then looked at Jake, then back at me and back at Jake and then grinned the biggest smile we have ever seen. Talk about a heart melting moment.
Side note- this was so special to us on many levels. Malachi is legally blind and has a hard time seeing and focusing on things. So to have Levi look us directly in the eye and study our faces is a first for us as parents. It makes me want to cry just thinking about it!
Thank you to the special people this week that volunteered their time to help watch Malachi and make these moments happen. Here is a sweet video of Levi studying Jake’s face:
We were also both able to be there for his first big boy bath! When his butt hit the warm water, the absolute funniest look came over his face as he processed. But he did end up loving it! Not a single whine or tear.
Levi loves to play games, especially with his feet. He smiles with his eyes often, but has recently started smiling more with his sweet little mouth. He pierces us with his looks and watches our every movement. We found a Target and bought him a few crinkly toys to try to break up the monotony in his day. We have also strapped his crib down with every noisy, bright, and exciting mobile and crib toy we can find.
Jake is officially back in Tennessee for the week and we have flown my mother up to sit with Malachi on and off throughout the day. Malachi has been extra goofy these days and makes himself laugh often. We try to Facetime with Levi every other day so they can get some brother time.
So 68 days have gone by…68 very long and daunting days. That is approximately 1,632 hours since we welcomed this sweet baby boy into the world.
As we prepped for Levi’s birth, Jake and I continually talked about how wonderful this time around would be. We talked about how refreshing it would be to have “typical” moments and “typical” baby issues. We talked about how weird it would feel to drive our baby home just days after his birth. I talked about how wonderful it would feel to meet my child the same day he was born…to lay eyes on him for the first time in person instead of on a camera. We talked about how we would each take a child and just live in survival mode for the first few weeks until I could get back to physically being allowed to take care of Malachi.
We did not talk about flying our newborn several states away. We did not talk about paralyzed vocal cords, experimental surgeries, pyloric stenosis, vomiting, bradys, and Ronald McDonald Houses. We didn’t come up with a plan B because we just so desperately wanted our plan A to work like it was supposed to.
I find myself battling some pretty severe emotions these days. It seems that every thought that passes through my brain is dripping with negativity and frustration. Every being of me wants to spend the next several minutes complaining to you about my current situation.
But I just can’t bring myself to do that with a clear conscience.
I started thinking about the concept of complaining…why we do it…what purpose it serves. The more I thought about it the more I realized that it can be a slippery slope when you are a Christian. It can even easily trick us into thinking that this life is all about us.
While sitting here and telling you how frustrating life is right now may make me feel better and solicit prayers, in the end it ultimately does not bring glory to God. It actually steals the spotlight from God and places it on my worries and woes.
The Bible says in 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.”
Paul also lets us in on a little secret to happiness in Philippians when he says: “I have learned in whatever situation I am to be content.”
Here is something you may not know about me…I am a VERY cynical person. And I am an extremely cautious person when it comes to choosing people I admire. Not super proud of that fact, but alas there you have it.
One of the people that has impacted my faith greatly through her testimony is Corrie Ten Boom. If you have not read Corrie’s book “The Hiding Place” I strongly recommend it. There are so many moments in that book that have challenged me in my walk with God.
She says: “This is what the past is for! Every experience God gives us, every person he puts in our lives is the perfect preparation for the future that only He can see.”
I want to end this journal with a story from her book about finding things to be thankful for, even in the darkest of circumstances. It is something I needed to be reminded of this evening, and I am hoping that it will speak to you as well. Corrie and her sister had been taken to a concentration camp after it was discovered they had been hiding Jews in their family’s shop. Here is an excerpt:
It grew harder and harder. Even within these four walls there was too much misery, too much seemingly pointless suffering. Every day something else failed to make sense, something else grew too heavy.
Then as our eyes adjusted to the gloom we saw that there were no individual beds at all, but great square tiers stacked three high, and wedged side by side and end to end with only an occasional narrow aisle slicing through.
We followed our guide single file–the aisle was not wide enough for two–fighting back the claustrophobia of these platforms rising everywhere above us…At last she pointed to a second tier in the center of a large block.
To reach it, we had to stand on the bottom level, haul ourselves up, and then crawl across three other straw-covered platforms to reach the one that we would share with–how many?
The deck above us was too close to let us sit up. We lay back, struggling against the nausea that swept over us from the reeking straw…Suddenly I sat up, striking my head on the cross-slats above. Something had pinched my leg.
‘Fleas!’ I cried. ‘Betsie, the place is swarming with them!’
We scrambled across the intervening platforms, heads low to avoid another bump, dropped down to the aisle and hedged our way to a patch of light.
‘Here! And here another one!’ I wailed. ‘Betsie, how can we live in such a place!’
‘Show us. Show us how.’ It was said so matter of factly it took me a second to realize she was praying. More and more the distinction between prayer and the rest of life seemed to be vanishing for Betsie.
‘Corrie!’ she said excitedly. ‘He’s given us the answer! Before we asked, as He always does! In the Bible this morning. Where was it? Read that part again!’
I glanced down the long dim aisle to make sure no guard was in sight, then drew the Bible from its pouch. ‘It was in First Thessalonians,’ I said. We were on our third complete reading of the New Testament since leaving Scheveningen.
In the feeble light I turned the pages. ‘Here it is: “Comfort the frightened, help the weak, be patient with everyone. See that none of you repays evil for evil, but always seek to do good to one another and to all…'” It seemed written expressly to Ravensbruck.
‘Go on,’ said Betsie. ‘That wasn’t all.’
‘Oh yes:’…“Rejoice always, pray constantly, give thanks in all circumstances; for this is the will of God in Christ Jesus.'”
‘That’s it, Corrie! That’s His answer. “Give thanks in all circumstances!” That’s what we can do. We can start right now to thank God for every single thing about this new barracks!’ I stared at her; then around me at the dark, foul-aired room.
‘Such as?’ I said.
‘Such as being assigned here together.’
I bit my lip. ‘Oh yes, Lord Jesus!’
‘Such as what you’re holding in your hands.’ I looked down at the Bible.
‘Yes! Thank You, dear Lord, that there was no inspection when we entered here! Thank You for all these women, here in this room, who will meet You in these pages.’
‘Yes,’ said Betsie, ‘Thank You for the very crowding here. Since we’re packed so close, that many more will hear!’ She looked at me expectantly. ‘Corrie!’ she prodded.
‘Oh, all right. Thank You for the jammed, crammed, stuffed, packed suffocating crowds.’
‘Thank You,’ Betsie went on serenely, ‘for the fleas and for–‘
The fleas! This was too much. ‘Betsie, there’s no way even God can make me grateful for a flea.’
‘Give thanks in all circumstances,’ she quoted. It doesn’t say, ‘in pleasant circumstances.’ Fleas are part of this place where God has put us.
And so we stood between tiers of bunks and gave thanks for fleas. But this time I was sure Betsie was wrong.
While the Ten Boom sisters were in this barracks they held church services with the other women. The were awestruck that the guards never caught on and many women came to know Christ through these services. Here is one more excerpt from her book:
One evening I got back to the barracks late from a wood-gathering foray outside the walls. A light snow lay on the ground and it was hard to find the sticks and twigs with which a small stove was kept going in each room. Betsie was waiting for me, as always, so that we could wait through the food line together. Her eyes were twinkling.
‘You’re looking extraordinarily pleased with yourself,’ I told her.
‘You know, we’ve never understood why we had so much freedom in the big room,’ she said. ‘Well–I’ve found out.’
That afternoon, she said, there’d been confusion in her knitting group about sock sizes and they’d asked the supervisor to come and settle it.
But she wouldn’t. She wouldn’t step through the door and neither would the guards. And you know why?”
Betsie could not keep the triumph from her voice: ‘Because of the fleas! That’s what she said, “That place is crawling with fleas!'”
My mind rushed back to our first hour in this place. I remembered Betsie’s bowed head, remembered her thanks to God for creatures I could see no use for.
Even as I read these words that I have read dozens of times, I can’t help but get covered in chills. The faith of these women in a circumstance massively worse than my own is startlingly amazing to see. So this week, I am challenging myself to thank God for the many “fleas” in my day.
Please pray for a good report from Levi’s bronchoscopy and huge gains with his feeds. Please also prat that he stops having brady episodes and regulates his heart rate. Pray that we can leap over the many hurdles that are currently in our path. And pray that my faith is strengthened during the many times I am under attack throughout the week.