(artwork by: Kierra with some help from Mommy:)

Life does not have to be perfect to be WONDERFUL!

Right now our days go from perfect to wonderful to stressful. It’s a bit like the weather right now. From clear moon warming the cold sky to mist hanging heavy like the Garden of Eden. From sunshine and birdsong to grey ceaseless rainfall.

We came home on Sunday with a happy little girl, a tired Mommy and Daddy, and an energetic little brother. It is wonderful to be home. In fact, it was so wonderful on Sunday that after we unloaded the van, we piled everything in rooms and let it sit quietly and roominate  🙂  We indulged in hot coffee and two children and the comforts of homey blankets and couch.

On Monday, Christene came over for a few hours to help out and watch Kobe while Kierra had Occupational Therapy . The nursing agency came to get all her paperwork caught up to speed, and I made a quick trip to the pharmacy.

On Tuesday, we did laundry and cleaned up and organized and did Vision Therapy.

It’s amazing how God plants thoughts in our heart and later, beautiful flowers tendril out from those seeds of truth.

On Tuesday morning, I had an article that was due and had no idea what to write about. It was one of those ‘well is dry’ moments and I didn’t really have enough energy or will power to even come up with a subject.

Something from the hospital kept nudging the corners of my mind. It had to do with watching ones you love, suffer in pain. Didn’t our God let His Son suffer to death for US when he could have stopped it with one word?  It was for a plan beyond our wildest dreams or imaginations. The same Jesus whose heart burst wide open for us is not going to let His children’s suffering on earth mean nothing. When it doesn’t make sense, and it seems so horribly cruel and unfair, He is hurting with us. He will make everything beautiful…in His time.

That was the essence of the article I wrote on Tuesday morning. i think I needed to get it out in words so I could handle the evening better.

About twelve hours later, Kierra started wretching and gagging. She has nothing in her stomach anymore since her new Jtube, so she didn’t get much up. 15 minutes later, her color was horrible. We honestly weren’t sure if she would make it. Her stats were good, but she was gasping for breathe.   I grabbed her oxygen and slipped it on just to try to help her breath better since it seemed she couldn’t get enough air into her lungs. She jerked and screamed in pain at intervals and acted like I had never seen her act in my life.

I threw open the door to the night to give her fresh air. The moist darkness slammed me in the face and I had a crazy sensation of danger curling through the fog that lay like a smothering, eerie blanket around the house. I wanted to slam that door shut again, but common sense quickly took over and Steve stood, strong and tall with Kierra in his arms, facing the moist curling tendrils of the night.

We tried everything we could think of, even giving her a relaxant and still she struggled to breathe. Steve sat on the couch and held her while I played Jesus Loves Me over and over on the harp.Slowly she calmed down and began taking easier breaths. Her rigid jerks relaxed, muscle by muscle until she was still, and fell asleep.

I could have kissed that harp.

And my strong husband . And my sweetly sleeping daughter. And my brave Kobe who nicely went about his quiet business and acted like this happened every night.

It took Kierra hours for her color to return. We suspect she refluxed and couldn’t breath past either her reflux or a pocket of air lodged in her airways.

Since then, she has been refluxing HORRIBLY. The nurse and I put our heads together and discovered she has not been getting her reflux medication put into her belly like she should have. Instead, it’s been going into her intestinal tube, totally bypassing her belly. No wonder her belly is such a mess.

So we don’t go far from her side right now. She is so miserable, wretching and bringing up stomach acid, since there is nothing in her stomach. Yesterday, Christine ran to the pharmacy to fill a new prescription that helps with wrenching and abdominal cramps. I think it helped some, but it feels like she has lost alot of ground on her stomach refuxing issues. She is passing old blood again and even brought up a tiny bit of new blood.

Hopefully, we can get it under control here at home! She is such a brave little trupper, gagging one minute, and sweetly smiling at us the next. I think I could take some lessons from her accepting sweet spirit!

Once again…that motto i saw in the drug store

Life does not have to be perfect to be WONDERFUL!

Enjoy the wonder in today.

 

 

 

 

I’ve tried writing this about 5 times and nothing comes out right, so I’ll quit trying to sound correct or proper or what I think people want to hear and we’ll see how it flows 🙂

The good news is that Kierra is tolerating 19 ml of very watered down formula an hour. Our goal is 47ml. She is ‘just on the verge’ of not being OK with it, but we keep creeping along.

She was in awful pain last night and I dreaded the night with all my heart. Partly because the night before had been really tough and because I was exhausted and I didn’t feel like dealing with this any more and I didn’t want to NOT deal with this, because the unknown and the oppiste of dealing with it looked too scary.

 I probably need to stop and process my feelings and emotions, but right now I don’t feel like doing that right now either. (i need to go calm Kierra, be back soon…or maybe not 🙂

So here’s the deal. If Kierra cannot tolerate enough of any kind of formula, we are headed for some hard desicions. The only other option for her sustance is a more permanent line that would sustain her with IV fluids. That would be a huge step because when we do that, we are entering another whole level of health care. And we are not at all sure we want to put her through all that.

 It’s more then just what we want for her in life. It’s what BEST for her.

That’s a hard choice for any parent to make and like our Doctor has told us in the past, “there is no right or wrong choice here.”

We need to do what we feel is the best for her and us. We need to get out of our own heads and into hers. And pray.

Yeah. That prayer thing is pretty hard to do sometimes. I think maybe I would call it more Breathing. Like being linked to God with our breathes…so close that He knows what we’re thinking and feeling.

I must be rather thick sckulled because I didn’t even really consider that this Jtube thingy wouldn’t work for Kierra until yesterday.

  Then I suddenly realized how much is riding on this whole ‘tolerating her formula’ thing.

 I honestly just kinda pushed it to the back of my mind. Because I don’t really want to spend time worrying and obsessing over it when it hasn’t even come to that point yet. It’s just that I don’t want to be caught off guard either.

 Right now, we are headed in the right direction…and we will pray hard that God would keep moving her digestive system along and we could get out of here with a happy little girl in a few days. Will you join us?

Yesterday a Kate and Katrina came to see us and we drank tea and talked and Katrina played harp music and Kate read me a wonderful portion from One Thousand Gifts. It was about the Israelites and how God sent them  manna for so many years and the meaning of manna is literally what is this? Sometimes the things in life are literally a big question of What Is This? that You are doing God? Right now, we choose to trust the heart of God. Because we know of no other larger, more compassonite, more perfectly wonderfully, right heart to trust.

Kate and Katrina didn’t even freak out when Kierra kicked her IV apart and there was blood dripping all over and the nurses came scurrying in and we held her firmly as they salvaged the IV ( PTL! a miracle in itself!) and retaped and swaddled her foot again. 🙂

Then today, Sadie and Brenda came with cheer and love and we bathed Kierra and went out to lunch in Brenda’s cute diesel Jetta 🙂 Thanks for taking pictures, Sadie! They are so special to me!

My parents were here so they stayed with Kierra while I took a nap at RM House. They drove over 4 hours just to see us and give me a break. Thanks Mom and Dad!!! It meant so much!!!!

Now tomorrow night, I’m hoping to see my Better Half 🙂 and my little two year old that I miss frightfully.Phone converstaion just doesn’t always ‘cut it’ anymore.

Tranquil rest to you all…snuggle deep in God’s Love and Peace!

 

Yeah! Praise the Lord! They had an open slot in the IR today and got Kierra’s new J/Gtube in. She did very well and didn’t need to be totally ‘put under’ but only sedated. Her IV was leaking, so they got a new one started as well while she was a little more relaxed. Now we are slowly increasing her feeds every 3 hours until we reach our goal of 47 ml per hour. We are at 10 ml right now:) She is sleeping again finally. She was awake all night the last three nights. I think she just wants to go home to her own bed. Thankfully she took a nap today, now tonight she is sleeping again.

The wonderful thing about this cold snap that has everyone shivering is that Steve got to have off work yesterday and today! That made me very happy! I even got to take a long nap this afternoon…bliss!! Personally, the cold cold outdoors felt very invigorating and brain clearing to me on my short walk to the car 🙂 Nope, I did not have to stay out for any long amount of time.

Steve headed home again tonight. Hopefully we can be discharged in a day or two and celebrate being together again. I miss Kobe! 🙂 It’s so much fun to talk to him on the phone now that he’s old enough to respond.

Guess what else? I got my cracked lenses fixed in my glasses yesterday! They have cracked twice now, and I haven’t even worn them much. Kierra likes to reach up and box them with her long arms, but I didn’t think that would be hard enough to crack them. Maybe they are weaker then I thought. This time I got a more shatter resistant lens.

Just a little secret… Lens Crafters was going to charge me $300! for replacement lenses. Vision Works only charged me $90…and did it in a few hours! I was highly impressed! I think they did a super job of getting my eyes focused in them too, since the last lenses made my eyes go weirdo. I can actually wear them without feeling tipsy! I guess it just takes coming to the hospital, having a great husband to watch Kierra,and a Vision Center close by  to give me the nudge to get them fixed. LOL! Oh! And I think this vision center did a MUCH better job then Sears where I got my glasses 🙂 So …good things come to those who wait 🙂

Yesterday, a friend texed me the amazing thought that God watched his Son suffer to death and didn’t do anything about it…because He loved us SO MUCH! So don’t think for one moment that God does not hurt with us when our children suffer also.

Last night, a Pastor stopped by on His rounds, and in our conversation, he mentioned the exact same thing! That God really DOES care that we live in a hurting imperfect world. He sent Jesus to this messed up place for US! Isn’t that just the most amazing Love and Grace!

It was a wonderful confirmation that God will walk with us through whatever we face in life.

Thank you all for your prayers! This has been a wonderful day! 🙂

Stay warm.