Life Lately
Dear Journal,
I’m currently listening to a playlist called “Relax Pregnancy” which I created when I needed to lower my stress level in the 2nd trimester. It includes less than 10 songs that instantly put me at ease. I listened to it every single day on my drive to and from the NICU. Those songs ended up being my “most played” on Spotify’s year end review, and I am still not tired of them. Anyways, it seems that I still need their relaxing effect as I power through our real struggles with our newborn’s daily medical home care.
A Bit of Chaos
Here is an Excerpt from Dec 29th…
It’s been a tough day. Today’s misadventures included:
- Pulling an all-nighter because as soon as one feeding ends, 20-30 minutes later the next one begins.
- Awaking to the baby screaming from tape being ripped from his face.
- Chasing the recycling truck for 5 houses with a very full bin and not catching it. At least I didn’t have to do it for the trash. We totally forgot to bring the bins to the curb.
- Completely replacing Baby’s NG tube 3x today. It’s not a fun process, as we have to basically shove the long tubing down his nose and throat to his stomach, and try to keep it still long enough to tape it down and not cause aspiration.
- During one of the placements, I unknowingly got a tiny bit of a chemical in Baby’s eye. His eye swelled and became pink / red, but I thought it was from crying. Hours later Jer let me know, and we rushed to clear it with warm water. I hoped and prayed it wouldn’t leave Baby blind. That’s how we ended up giving him his first shower.
- The shower involved keeping Baby’s eye open to shoot his eyeball with a syringe of clean water. It felt like waterboarding, but thankfully he didn’t throw up. Tried to soften it up by giving him relaxing massage and soap in there in between so he doesn’t get traumatized with baths or showers.
That was all before noon I believe.
Staggering Numbers
Going through the Medical Bills, and WOW… The running total is over $1.25M.
Our 100+ day stay included $7,000-$9,000/day for NICU care, $1K-$2500/day for respiratory care, $450+/day oxygen, $900+/day for each doctor visit, $118 for a vaccine, $378 for each X-ray he got weekly, $380 for each blood panel, $579 per hydrotherapy session, $2000 viral panels, each of those inhaled meds he gets or vitamins or caffeine shots or diaper cream… I have 85 pages of itemized bills. It’s not finalized, but it’s showing as our responsibility after insurance could be over $475,000, which is about the cost of an actual house right now. Astounding.
We worked with the hospital’s financial aid programs and qualified for Medicaid. Praying that will help take care of a lot of this growing medical debt.
Day in the Life at Home with Tube-Fed Newborn
Baby’s been sick on and off throughout our entire Christmas break. We barely were functioning then, and never got a confident routine going since sickness can throw everything off.
This is now our first week with Jer back at work and the kids in school, so I am home on my own with the baby in charge of his care without extra hands or help. I’ve been using my management skills on overload to multitask and prioritize sleep over most things during the day, and it’s taking a toll on my body and mind. I can only do chores in a burst of energy or when the rest of the family can help.
I’m acting as Baby Henry’s nurse for both Day shift and Night shift. Things that an entire team of staff at the NICU used to do are now my responsibility, in addition to the “Mom stuff” like pumping.
Baby has feedings every 3 hours, and for that we bottle feed him for however much he will drink in less than 30 minutes and then put the remainder in a milk bag attached to an entereal pump that goes into a feeding tube into his stomach. This takes anywhere from 15-40 minutes. Since he has pretty intense acid reflux, we keep him upright for 20ish minutes after his gavage feeding, so in total it takes at least 1.5 hours to do a feeding. Often I will just finish a feeding before it’s time to prepare for the next one.
On average we are re-taping the NG tube to his face or needing to re-insert the tube every other day. It involves shoving the tubing down his nose and throat into his gut, and checking using a syringe that the measurement was precise so that it doesn’t cause him to aspirate.
Instead of throwing away a syringe every feed like we did at the hospital, we need to take time to clean out the milk bag and prime the tube before/after each feeding and the bags get replaced daily. All the bottles and pumping parts must be cleaned and sanitized. He gets medications twice daily, including a breathing treatment and vitamins. His feed is fortified, so my milk is mixed with a gentle formula to make a recipe that we use while he can tolerate it. Sometimes he throws it all up when he’s sick or given too much volume, and we have to throw it out (pretty upsetting to waste so much pumped milk) and give him straight mother’s milk.
This is in addition to baths, taking him out with the dog on a daily walk, all the diaper changes, etc. I’m usually rushing through my meals and pumping during the day, so I look forward to sitting down to eat with the family for dinner.
My least favorite thing to do (besides dealing with sickness) is organizing his care outside of home. Traveling with his feeding tube is a bit of a job. I call to order supplies for his home care. I call to arrange his appointments with his regular doctor, nutritionist, feeding therapist, cardiologist, urologist, radiology for the urologist, and a BPD clinic. These places are all over the valley and sometimes months in advance. I’m especially not looking forward to the BPD clinic, which is in Salt Lake and is at 7am so working around Henry’s feeding schedule is tricky. The appointments also always take longer than expected, so it throws all his feedings off again rushing back and forth. If it sounds like I’m complaining, I kind of am haha.
What Saves Us from Total Exhaustion
Co-sleeping has been a life saver for me. He wasn’t sleeping well in his bed, and I was getting up every few minutes in the night to adjust him or put his pacifier in or just to hold him again. It’s not something I recommend to anyone, but I finally just had to let go of the “safe sleeping” teachings ingrained into us at the hospital, and trust my own instincts as a mother who’s co-slept with each of my kids before to keep him safe next to me. We both get better sleep now.
I’m finding that self care is so important right now because I can’t function or make it through all of this. Jer and I are trying to get sleep where we can; he’s my biggest help at the hardest hours of midnight and 6am. I try to take a shower daily, mostly because I need it after all the spit up and fluids and things I’m up against. That shower can turn everything around for me, I look forward to it so much!
I feel so drained, and then I see my Baby smiling his angel smile at me… and it shoots straight into my heart and warms me and I don’t think it’s so bad as all that.
I’ve been finding joy in my audiobooks in the 1-2 hour blocks of feeding Henry. Jer has stocked me up with chocolate, and it’s weird how much that gives me a small boost of energy through the hard moments sometimes.
When I’m so tired I am sobbing and I honestly don’t know how I’m going to make it through the hour let alone the day, prayer is my comfort and my strength.
God is propelling me forward and bringing me help, giving me courage to ask friends to help me walk the dog or pick up my kids from school because I just literally can’t do it with this schedule. I am so so very grateful for them! Lily holds baby while I wash the pile of bottles and syringes that we need for the next feeding, and make a load of all the burp cloths and baby linens. Henry’s stuff is the only laundry that’s getting done consistently! Jer comes home with dinner and food so I don’t need to run those errands or use my very limited time cooking.
Well, that’s a snippet of our life right now. This season is kind of overwhelming to me, but I remind myself that we will grow out of it. The uneasiness and fear and uncontrollable everything will end sometime. I’ve just got to keep stretching and resting while I can. I should be sleeping now actually, but I thought unburdening my mind would help me be able to sleep better. Pray for me!!
Love, Kat
