It began as a NICU mom, but it continues as a preemie mom–the numbers game. You find yourself obsessing over so many of them–oxygen saturation, ounces and calories in, weight, length, head circumference, age at so-and-so milestone, how old is your kid, where are they on this developmental scale or that. You give in to the fallacy that it’s one of the things you can control–except you can’t really. So like anything else in life, the only thing you can control is your reaction to it. So you do your best not to let yourself ride every up and down of the roller coaster, to not obsess about whichever number has you most concerned on any given day. And you thank God for having numbers to obsess over.
- Three weeks ago, the numbers we were most concerned with were weight. In the last post, I told you Struthers was just barely 18 lbs and hadn’t grown in three months…well, right after that post, he actually went back down to 17.5 lbs and has lingered there, falling further and further off the charts I’m not supposed to pay attention to, but every doctor shows them to us and uses them to make decisions. So after our last round of appointments, it was decided that we would switch his formula from an infant one to a higher-calorie toddler one, but we were limited to the only corn-free option on the market. Which brings us to the next set of numbers–
- Most formulas are 20 calories/ounce, and Struthers generally takes 16-20 ounces per day, totaling 400 calories on a great day. Now we’re on a 30-calorie ‘complete nutrition substitute’, which gives us a base of about 600 calories per day. He’s eating some ‘solids’ (aka “a bowl of mush”), but even with peanut butter, whole milk and coconut oil-loading, his maximum calories he will take in on a day is about 800. We’ve learned that the increased-calorie formula also means he doesn’t really have an appetite for the solids, so it’s a balance. A kid Struthers’ age (or even his adjusted age) needs AT LEAST 1000 calories a day just to maintain. And that’s not even taking into consideration growing, working hard to breathe or exertion with our latest fun–crawling! For catchup growth, our pulmonologist wants to see him at 1200-1400 calories per day. And while none of our physicians want us ‘calorie-counting’, they agree that his basic intake is just not enough. But anything more than that really does make for days consumed with practically force-feeding. Enter, next set of numbers…
- We have a specialist appointment tomorrow during which it will be decided whether Struthers will go on continuous nighttime feeds through his G-tube. His transition to the new ‘shake’ has been wonderful, and so much easier than previous transitions. So I wouldn’t be surprised (but I will cry) if tomorrow’s scales show us a 19+ after 4 weeks. And maybe, just maybe, that number will allow us to avoid the continuous feeds for now and stay the course. Or even better, go back to a normal-calorie toddler formula and work on our table food consumption! All of which would be nice as we approach the end of our Medicaid eligibility year and the new plan year from my employer’s insurance plan. Enter, numbers (and God) again…
- So we were discharged from the NICU (originally) on February 27 of last year, and that began our year on Low Birthweight Infant Program. This program made Struthers automatically eligible from birth-1 year (post-discharge) for Medicaid without the income requirements and crazy paperwork. So in March, it was time to go through the evaluation process for whether Struthers still qualified for the assistance. God’s timing is perfect. At the same time discussions were beginning about whether and when to start continuous tube feeds and “failure to thrive” was thrown out there, here we were being evaluated for whether Struthers’ still qualified for Medicaid. And while we have primary private insurance, I can’t tell you how many times I have been oh-so-grateful for the Medicaid secondary that allowed us some choice in where Struthers gets his care and provided us with formula when we figured out that only the most expensive one on the market was corn-free. So I was nervous about losing this, but also thought it was probably for kiddos with much higher needs than Struthers’. Then, during my first appointment with the case worker, as she reviewed his medical records and 4 (!) unscheduled admissions since the original discharge, she said, “Well, you’re eligible for 14 hours of home nursing care a day, you’ve been using that, right?” Wait, WHAT?!?
- So shortly after the evaluation which immediately deemed Struthers disabled (continuous oxygen use and G-tube made it automatic), he was again Medicaid-qualified on a different non-income-based waiver. During yet another evaluation, it was determined that he also qualified for the full nursing care (not even CNA, which would pay me to take care of him), and we began looking into the logistics. I had a lot of hesitations about it–I didn’t really want Struthers’ life to be about medical any more than it already was. I didn’t want him hooked up to the pulse oximeter all the time. I wanted him to crawl and play. By all appearances, he seems so ‘normal’ and I find comfort in maintaining normalcy for him. And I love our nanny, Christiana. But again, God’s timing is perfect. While we were presented with this opportunity, Struthers came down with yet another cold, and this time he refused to eat or drink ANYTHING for almost 24 hours. (Never thought I’d cry at no wet/dirty diapers!). And Eli was out of the country. So while working fulltime, I spent the evenings manually pushing tube feeds for the better part of a week, and started thinking much more about that nursing help. The more I thought and prayed about what to do, the clearer it became, and we decided to walk through the door God had opened. We found a local agency that specializes in pediatrics, and they recruited someone just for Struthers. Beginning last week, Struthers has a nurse with him 3 days a week while I’m at work, and he still gets to see his “Bǎomǔ” Christiana at least one day a week too!
- Fast forward to the last week or so, and God has confirmed just what we needed to know in making this transition. Last Thursday, Struthers choked (he chokes a lot and does this ‘fake dry cough’, but this was the real deal and it happened while I was still home) and Christiana swiftly sprang into action, delivering a Heimlich Maneuver that got our baby breathing again. Let’s face it, I was absolutely no help in this situation, and I was never so thankful for Christiana and how well she knows Struthers–well enough to almost see it coming as it happened and know he wasn’t ‘fake coughing’. I didn’t think Struthers was really sick over the weekend, but I did note his coloring being a little off, how tired he was getting quickly, and how hard he seemed to be working breathing (retracting). I thought perhaps he had aspirated a little with the choking, but he seemed OK and I couldn’t hear any crackles in his lungs, so I didn’t worry too much. On Monday morning, Corina (our nurse) did her assessment just after I’d left for work. Struthers’ oxygen saturation was low, like 79% low. So having a nurse at home meant I didn’t need to rush back home right away–she could troubleshoot with oxygen flow and nebulizer treatments first. And that she did…his oxygen needs have been increased this week, and he was on a full liter (usually 1/8 daytime) for 2 days, but his numbers have looked much better and with proper management we avoided the reactive escalation in his lungs. I also mentioned about the 16-20 ounces of intake, with 20 ounces being a ‘good day’. We really have no room to slide off this, so when Struthers doesn’t finish his bottles (about 50% of the time), Corina is able to do a tube feeding that ensures he’s meeting a minimum calorie count for the day and I don’t have to spend time in the evening force-feeding.
- The Lord is amazing in His Omniscience and Timing. Something I didn’t think we needed a few weeks ago has given me a huge relief and the ability to just be “mom”. I didn’t really have a comparison point for what was normal, and it’s easy to dismiss it because all infants/toddlers/kids are lots of work. But I’m just now realizing how much time I was spending (in addition to fulltime work) ordering and maintaining medical equipment, supplies, coordinating doctor’s visits, tests, evaluations, and therapy appointments. Now it’s time I can actually enjoying Struthers for who he is, not just messing with tubes or coaxing him to eat enough. All in all, I’m so grateful for everything about this transition. I’m grateful that Christiana can still have some time with Struthers, who she’s been with and loved from the very beginning. I’m grateful that she will be able to spend some time bonding with her new little one soon, and that she’s been able to explore her talents and build her mommy-confidence skills she will soon need. I’m grateful for the incredible friend she’s been to me, for the times she’s wiped my tears, encouraged and understood when I didn’t want to walk out the door and leave. I’m grateful for a nurse who seems like part of the family already, who seems to genuinely love Struthers and delights in doing all the ‘nursing’ things I didn’t realize I was even doing. And I’m so very grateful to both of these ladies for just loving Struthers and helping us give him what he needs.
- Qualification for Medicaid secondary insurance, home nursing care and that it all fell into place beautifully!
- Struthers is crawling all over the place now!
- Eli had a complicated but successful hip surgery a week ago and is recovering well.
- Weigh-in and gameplan setting tomorrow!!!
- Stay healthy, breathe easily for Struthers!
- Continued recovery and encouragement for Eli, who’s not used to being so inactive 😉
Comments imported from CaringBridge (8 comments):
Finally went back and read this post. Wow! God’s timing is great and I am so thankful that you will have nurses to help little Struthers and give you piece of mind and a Mommy break! Praying for you all!
—Susie Short, April 18, 2016
What an awesome God we serve! Praying for you all. It is amazing how God has equipped you to be the Mother you need to be, and have the skills you didn’t even know you had. God bless you all!
—Jill Willingham, April 7, 2016
It’s so good that you give these details so we can help carry your burden through prayer. I wish I could do more, but I know God is working in amazing ways. We love you and will continue to pray for Struthers’ good health.
—Evania Ku, April 7, 2016
It is so amazing just how perfect God’s timing is. We just have to keep the faith! The Neff family continues to pray for your little man and your family!
—Teresa Neff, April 7, 2016
Makes me so wish I were closer and could hold my own baby girl in my own mommy arms. Love you, girl. Hang in there. What a mighty God we serve!
—Mommy, April 6, 2016
Wow what an amazing series of Blessings and timing lining up for your primary mission. That is to be Mom to your little boy! Thanks to our Divine Heavenly Father for answering our prayers and bringing new challenges and joy to all of our families — In His name — and on an hourly basis. We cannot imagine the emotions of the choking situation! And prayers of thanks too for Cami and Eli and their combined ability to write about raising Struthers in such an easy to read story filled with emotion and especially Love. God Bless!
—Rick and Billie Broome and Family, April 6, 2016
I really enjoy reading and appreciate your updates. I have no doubt that all of this can be very stressful at times, but I pray that our Lord will continue to be you each step of the way, and that he will continue to richly bless you and your family. Love you Cami.
—David Summerall, April 6, 2016
Wow! Awesome news with really great changes, in many areas. Moving forward to victory!??? Tell daddy to feel better soon! Snuggle time for the boys.
—Marj, April 6, 2016