Feeding Tube Fiasco

So, I am thankful this is the first of its kind. Here's our funny feeding tube fiasco tale.

Last night Kara had a hard time going down. She had her last feed at 9:50. Feeding tube bonus: if it's a full feed (none through bottle) we can set the feeding tube to automatically give her the same amount at 3 a.m., and then I can "sleep in" until I need to pump at 5. Awesome, right? So it was set for a 5 hr 10 minute "interval". We ended up being up with Kara until 11 p.m. when she spit up and burped quite a bit. So, Kara change, sheet change, diaper change and then finally bedtime, hooray!

All was quiet last night until our alarm at 5. Kara continued to sleep until 8 (wow!! She's usually up at 6, this sleeping in was a huge blessing and Mommy was having delusions of grandeur thinking through all she could accomplish today). I didn't think much of her sleeping in this long since she's back on "full calorie feeds" and is probably rarely hungry. Just catching up from last night. At 8:30ish I walked by her room and peeked in, and she was awake and looking around. I went in to get her an noticed a few things:
1) her feeding tube had been pulled out (see pic below)
2) she was soaking (probably wet through) and then...
3) I heard her feed pump going. Yikes! Oh my goodness... she had slept long enough that her NEXT (after 5hr10min) feed was going on. This has NEVER happened that she slept that long for it to be an issue, her feed is supposed to be at 6 a.m. Then it clicked... she was SOAKED because of the milk going through her tube and "feeding" the front of her shirt. Thankfully I had not yet washed everything from the night before (was just about to) so I changed Kara, changed her diaper, and sheets and mattress cover.

Then, the next challenge. Putting in her feeding tube by myself... dum, dum, dum. I prayed for grace and received abundantly. I took a picture for posterity's sake.

Oh, yeah... in the meanwhile? Connor & Katie were arguing, shrieking, pushing, etc. so they are currently in "play alone time".

Kara when she awoke this morning:

Kara on her current feed after Mommy replaced her tube:

Bright spot in a dreary day

I'm so thankful my kiddos enjoyed the rain, it definitely brought a "thank you, God" to my heart in an otherwise dreary day.

What we do

Putty the wall with Daddy (good Father's Day activity!)

Go on a walk with Mommy (yes, it's a full body workout). Isn't it amazing we can all fit on one stroller? And yes, Mommy is trying to teach us to actually WALK on walks ;)

Never too early to learn how to cook! Connor put this in Kara's hand at Mommy's request, great job Connor!

Quick! Kara's not watching, get on her wedge!! (Reflux wedge for Kara. Works GREAT for her tube feeds - works great as a tumbling mat for the big kids as well)

Ride around in the Ergo. The solution to Katie's "will you hold-you-me?" question when she was tired at 4 p.m. last Friday.

Kara

We met with Kara's feeding therapist last Thursday, and we decided to do a short "trial". She mentioned that at 5 or 6 months, we might try a 10 day weaning process to get her off her NG tube. Since we were going to decide about a G tube this Thursday 6/23, I wanted to do a short trial now to see if the "weaning process" made any difference in her oral intake. (Since then, our surgery appt has been rescheduled for July 7 - again, I am reminding myself to trust our God who does all things well, because I feel like this Thursday would have been better!)

Here are the details, for those who are interested.
1) The norm. Each day Kara gets 7 feeds of 110 mL per feed at 22 cal/oz (it's all so scientific and mathematical!). Before we started, I totaled her daily oral intakes over the past few weeks. She averaged about 120 mL per day by bottle (yikes! Only 1/7!!)

2) The process. The last 3 days (Sun to Tue), we gave her the "normal" 110mL through the tube for her overnight feeds. The 6 a.m. feed, we gave by bottle then added 50mL of water through tube (to help her hydration levels but encourage her hunger). Next feed, 9 a.m. give bottle, then add 45 mL of milk through tube (down from her avg of 80mL through tube). 12 p.m. repeat the bottle, 50mL water feed. 3 p.m. repeat bottle, then 45mL milk. 6 p.m. bottle, 50mL water, 9 p.m. is a nighttime feed all through tube.

3) The outcome. She has eaten way more often (one time 8 bottle feeds during just the day time) because she HAS been hungry. Her oral totals have been in the 200s, with an alltime world record of 100 mL feed today at 3:45 - way to go, Kara!!

4) Some thoughts. Tonight before bed she was definitely refusing a bottle, but was hungry - would not stop crying until I started her feed. So, that is a good reminder to me that she simply cannot do it. She does not have the lung capacity. However, I am encouraged that we can babystep her to feeding independence eventually. And that she DOES eat a lot more when she is actually hungry. Which makes me wonder... has she ever been truly hungry until these last 3 days? Taking the long view of things, it's a delicate balance. We would like for her to be 'normal' and off the tube, but for her lung development, it is essential that she grows well. That is the Drs. main concern. Thank you for continuing to lift us up in prayer as we navigate these waters and choose what is better vs. what is good for our daughter.

One more thing... have we mentioned that Kara is now smiling, laughing, blowing raspberries, and making "guh" and "buh" sounds? Ah, the normal baby stuff. Does good to a Mommy's heart!

Good Thinking

I have been reading "A Chance To Die" by Elisabeth Elliot. It is the biography of Amy Carmichael, missionary to India. Amy was a prolific writer, and a sober-minded soldier for Christ. She truly redeemed the time and sought to use her energies in the most spiritually profitable ways possible. Here are some quotes I've read this week that have encouraged my soul.

After many difficult things happened, one of Amy's mentors in her work, a close spiritual friend, died. Elliot writes,

"Kind people, wanting to console, made the usual observation: 'It is very hard to see how this can be for the best.'
'We are not asked to SEE,' said Amy. 'Why need we when we KNOW?' We know - not the answer to the inevitable Why, but the incontestable fact that it is for the best. 'It is an irreparable loss, but is it faith at all if it is 'hard to trust' when things are entirely bewildering?' "

In this same period of life, Amy writes in a prayer poem:

"From subtle love of softening things,
From easy choices, weakenings,
(Not thus are spirits fortified,
Not this way went the Crucified,)
From all that dims Thy Calvary,
O Lamb of God, deliver me.

And another:
"And shall I pray Thee change Thy will, my Father,
Until it be according unto mine?
But, no, Lord, no, that shall never be, rather
I pray Thee blend my human will with Thine."

And this poem hits me, living in modern America, quite hard (especially the last 2 lines). Reminding me to think correctly about what the life if a servant of Christ should look like:

"Hast thou no scar?
No hidden scar on foot, or side, or hand?
I hear thee sung as mighty in the land,
I hear them hail thy bright, ascendant star,
Hast thou no scar?

Hast thou no wound?
Yet I was wounded by the archers, spent,
Leaned Me against a tree to die; and rent
By ravening beasts that compassed Me, I swooned:
Has thou no wound?

No wound? No scar?
Yet as the Master shall the servant be,
And pierce-ed are the feet that follow Me;
But thine are whole: can he have followed far
Who has no wound nor scar?"

My 3 Little Boogs

(We have called Connor "the boog" or "boogie" since day 1, Katie in Utero was "boogie 2", and we frequently call them all our boogies).

Kara's new game/talent is pulling our her tube. She did it 3 x in a row yesterday (of course, during a feed) and also today (last time pulled it all the way out, with gloved hands. Our bad for not replacing her replicare tape which was slightly un-adhered). Hooray for budding fine motor skills!! Boo for now having to glove her hands! (Please, Lord, let us get a G tube in the next few weeks).

Katie asked for a "nother bite of your pantake, please?" I said no, she could have hers. (She had just had one of mine). She responded with sad, big brown eyes and said in a sad voice "No, I cannot eat this pantake." I asked, "why not?" She said "because I'm crying for my bankie (blankie)".

On the blankie note, one of Connor's most insightful comments was at my Mom's house one time. He said "When we're not in our beds, our blankies are crying for us!"

I love my boogs!

Pics from TX

Papa is always ready to play with the Grandkids.

Reading with Daddy is a favorite wherever we are.

G.G. (Great Grandma, Meg's Grammy) loved our little Kara-beara.

Aunt Liz (a medical doctor) let the kids give her a "check-up"

Outside in the sprinklers!
3 of Katie's favorites: G.G., red bear (who belongs to G.G.) and sunglasses!

Fun at the Spray Park starring cousins Julia & Jacob with Katie & Connor