Shout Out

…to our parents.

All four grandparents visited today. Finn didn’t know what to do with himself. He was overwhelmed by love, kisses, prayers and lots of cuddling. He is exhausted.

Family can bring stability and healing. Joey and I are RICH simply because of our families. This is a gift from God we will never take for granted, and we will teach Finn the same. Hopefully as Joey and I age we will continue to display the best characteristics of our parents: the wisdom and humility of our dads and the nurturing love and hospitality of our moms. Praying Finn gets the best of us too.

Enjoy Sabbath tomorrow, hopefully with your family. We miss you Leah, Tyler, and Chad. Desperately.

Advertisements

Bodily Functions

I don’t feel much like writing today, so Joey’s stepping in for me. This won’t be the last time. πŸ™‚

Finn is progressively doing better.

(1) We still cath(eterize) every 24hrs. Just so you know how awesome he is…it is his routine to peacefully drift off to sleep while we roll him onto his side and begin poking and prodding. I see him saying, “Go on, do your worst, world. I’ll be sleeping.”

(2) His IV’s come out tonight–meaning the doctors have seen him eat well enough on momma’s milk that the supplemental electrolytes and lipids are no longer needed. I see him saying, “Momma din’t raze no foo. I want the good stuff.”

(3) Continuing with the theme of Finn’s anatomical updates, his digestive track seems to be working excellent. Finn HATES dirty diapers. We believe this is especially true because he’s lying prone, so everything slides down, so to speak. Adult content warning: In our nurse’s most clinical terms, “Testicles should not have poop on them.” He had the type of blowout that you hear parents talk about, but you have to see to believe. I’m so proud of him. I think you know its love when poop and pee bring literal tears to your eyes (my nose is stinging right now..and not from stench).

Continue praying for Finn.

I have never, in all my life, seen prayer work in community like I have through you and through our situation. Thank you for allowing God to be visible through your acts of love. What has formed around Finn is a foreshadowing of the Kingdom in which we will all eat (and never go hungry), run (and never grow weary), and love (and never be abandoned).

20120310-165900.jpg

Hiccups

Finn in NICU from Joey Armstrong on Vimeo.

Finn’s progress had a bit of a hiccup today. His head circumference stayed the same, he was really fussy, and he didn’t really want to finish all of his feedings. I fought the urge to prod him to drink the remaining 5 ml’s of his bottle, just so we can get out of here sooner. But then I realized that if anyone deserves to have a rough day, it’s him. He’s endured and conquered a lot these past twelve days. Let him be grouchy.

So I decided to divert your attention instead to one of our favorite happenings post-feeding: his hiccups. (Be sure to turn up the volume on your computer/phone). Enjoy!

Take a Nap

Doesn’t rain make you sleepy? Something about rain makes me want a blanket. Finn did too, so we covered him in the adorable blanket that Nana Becky (Joey’s mom) made him.

Listening to the rain beat against the window in the NICU, I was dozing off during skin time with Finn and Joey had slunk down from his chair to the floor and fell asleep on a pile of blankets. I know…pretty gross to lie on a NICU floor. That’s how tired we are. Our nurse startled us as she stated in her outside voice, “Mr. and Mrs. Armstrong; this is an intensive care unit. You cannot set up camp and sleep bedside.” Now, before you call the NICU or threaten to beat any of our nurses up, know that this nurse was a good one…a little forward, but just doing her job.

I had a lactation consultation about a hour later in which the perky little lady (lactation consultants are the perkiest women I’ve ever met) told me that in order to increase my milk supply, I needed to be sure to take frequent naps. Are you kidding? I’m sure moms at home don’t get naps, and I know first-hand that those in the sterile environment of the NICU aren’t even allowed to. I promise I won’t go into detail about breast feeding, but it went much better today. What a special bonding experience!

Joey and I came home to Norman this afternoon to do a little laundry, get the mail and some “rest.” Opening the door, we found the cushions of our couch propped upright and drying. My sweet mom hired us a once-every-other-week housekeeper during this crazy time in our lives, and yesterday she even had our carpets and couches professionally cleaned. It has changed my life. Our housekeeper does an amazing job…a little too amazing…it’s making me lazy. At first I was too prideful to allow someone else to clean my house. I was taught to be incredibly tidy and organized. My grandma even irons underwear, sheets and socks. My mom irons t-shirts you’d sleep in. I’m not nearly as good as they are, but it felt like cheating to let someone else clean for me. After a couple months of this luxury, I’m over that.

Updates:

  • Head circumference down another .5cm
  • Weight down a little too…they say due to breast feeding
  • Orthopedic surgeon stopped by yesterday at the request of a friend and to examine Finn’s feet and legs. Turns out he doesn’t have clubbed feet; they are planovalgus, or flat and turned outward. He said this may even be due to “tight packaging” inside me and not necessarily due to spina bifida. It may correct itself on its own, so they won’t cast him unless they have to. Praise God!
  • We want out of here! We think Finn will thrive even more at home, but they are predicting early next week. It’s frustrating, as we feel a little like we’re trapped in the system. Thankful for the good care, however.
  • THANK YOU for your prayers and support. We are so humbled by so many of you who’ve reached out. I’m not sure why you care so much, but thankful that you do.

The Pearl

My dad travels a lot for his company. However, he hasn’t had business in OKC for several years…until this week, the week his first grandson is in the OKC NICU. I don’t think that’s a coincidence. After a quick breakfast at Panera, Papa Mike held baby Finn for about 45 minutes…soothing him so much that his alarms went off because his breathing became too relaxed. Between pats on Finn’s little diapered bottom, Dad told me about a vision, or thought he had yesterday. The family (Rosells and Armstrongs) were all surrounding Finn, praying for him. Then Jesus was there and we all stepped back, allowing Jesus to hold him. This reminded my dad of a verse in Mark, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these” (10:14). I love the idea of Jesus paying special attention to my little one. As I said yesterday, sometimes we feel we’ve been forgotten by God; like He hasn’t heard our prayers (or yours). Perhaps we’ve all felt this way at one point. I just have to trust that He’s bigger than all this. His plan is bigger.

I received a package in the mail yesterday, the contents of which I’ve waited several weeks for. Inside was a necklace with Finn’s name on it from The Vintage Pearl, a Tulsa company specializing in personalized jewelry (Thanks, Emily and Paul!). I’m not very much into jewelry, and there are very few things I’d want to flaunt around my neck, but his name is definitely one of them. I’m so proud of our little fighter. The pearl hanging above his name reminds me that although the oyster is ugly and rough on the exterior, there is a precious, unique jewel hidden inside. Maybe our situation mimics the oyster and the pearl.

His head circumference is down another .5 cm today. The doctors are happy it’s going slowly, so the “plates” in his skull have time to fuse correctly. Joey bottle-fed him again and it was a success. We saw him without a tube in his mouth for the first time while they were changing it out…love those lips!

Praying for another smooth day, for leg movement, for decreased swelling, for successful feeds to get us out of here sooner, for a good night-time nurse, and for strength and endurance along the way.

20120307-113326.jpg

20120307-113335.jpg

20120307-113350.jpg

20120307-113402.jpg

In Da Crib

Today’s light has made up for yesterday’s darkness.

Here are some highlights:

  • Our nurses are amazing! We’ve overall had a great experience at OU Children’s NICU. Yesterday was an anomaly.
  • Finn graduated to a crib! No more warmer bed, as he can retain his own body heat. He looks more like a baby and less like a patient in this crib.
  • Though breast feeding was a little traumatic, we tried bottle feeding today to see if he can suck/swallow on his own. He downed 22 ml’s like a champ!
  • We saw more hip movement today. Still no quad/lower leg movement, but we’re hoping as his brain continues to de-swell, he may regain movement there.
  • We are now completely off pain meds. Though it is difficult to watch him squirm in pain, we are glad he’s on the road to recovery.
  • We do not have Nurse Sassy Pants again tonight. Praise Jesus. I think I might trip her.

20120306-190929.jpg

20120306-190937.jpg

When It Rains…

It pours.

About an hour after my post yesterday, things fell apart. I hate to be negative, but the reality of our situation is that it’s tough. Very tough. And most days the difficult moments outweigh the positive ones, but it’s more fun to be optimistic. I will continue to use this blog as an outlet to update friends and family and perhaps provide hope, solidarity and perspective for others. However, I’ll also be honest when there isn’t much good to say. Yesterday was one of those days.

Joey and Finn were enjoying “kangaroo care,” or skin time (serene pic below) when two supervisors loudly entered the room, turned the lights on, and said, “Time to move! Come on; let’s get you packed up.” A nurse packed up all our things, Joey and I replaced Finn in his bed, tangled in wires and cords that pull at him and make him scream. I began taking the encouragement/prayer cards off our window–bright spots of hope and reminders of truth that felt wrong to take down while our journey here isn’t finished. They bumped his bed and IV’s to the opposite side of the building into a hot, humid room with no chairs. We immediately began sweating as we tried to calm Finn down. Haven’t you noticed that stressful situations become almost unbearable when you’re physically hot? The real kicker was that in the room change, the supervisors didn’t switch Finn’s monitor to the nurse’s new phone, so when his heart rate was increased to 213 for about 30 minutes and all his alarms were going off, our sweet nurse was in another room prepping the new baby that just arrived, unaware. He finally calmed down when we swooped him up and put him on my chest. He just wants to be held, but each time we hold him there’s danger of hurting him. It feels awful not to be able to comfort your child.

So many other things added to the storm of yesterday: Joey went to another room to get us a chair and a breast pump and someone tracked him down to tell him there’s only one per room (our roommates were using/hogging both). Finn cried constantly. We tried breast feeding and though he latched a couple times, he was in so much pain on his side (can never be supine), he screamed between each suck. After dinner we returned with some strength to face the evening. Upon entering the building, the fire alarms went off, thus the elevators were locked down. We climbed all 7 floors…more exercise than I’ve had in several weeks…and not comfortable with a c-section wound. In an attempt to bite my tongue, I’ll just say our new nurse for the night was the worst we’ve had at the NICU. We actually argued. Joey and I never argue with strangers. Our nurse was completely inattentive, always going to her other rooms (probably in an attempt to avoid us), and Finn was going ballistic. So we tried to do kangaroo care on our own. His cords got caught and Joey couldn’t get them unstuck. I cried hysterically because I thought he was going to drop him. We planned to stay the night sleeping on the tile floor because we didn’t trust Finn with our nurse. After talking to a supervisor, we decided that we’d be worthless parents today if we didn’t go home and get a little sleep. We left at 1:30am.

There was a moment where I was in the recliner holding our little nugget and Joey was in a chair opposite me holding his head crying. We looked up at each other in pain, yearning to just escape. To run away. We were reminded of our summer in Slovenia where a missionary dropped us off two hours south of our base village and told us to find our way home and to minister to rock climbers along the way. We were in a foreign country, no cell phone, we don’t speak the language, there is no grocery store or restaurant around for miles, we are in a tent, it has been raining for 3 weeks straight, and we are scared. We wanted to escape. To run home. God rescued us from our fear and desperation during that time, and though this situation is a million times harder and the difficulty will not end (nor would we want a life without Finn), we know God will rescue us. Maybe in small ways. Maybe there won’t be miraculous healing. But He’ll find a way to remind us He loves us and hasn’t forgotten us. He always does.

20120306-190825.jpg

20120306-190902.jpg