Wednesday, March 25, 2015

Probably the Best Wallower...if anyone was keeping tabs

 Today is a hard day and see how fast it happened after just posting about small stuff and sweat. My world is feeling very small and wallowing is the natural posture that I tend to turn. Trying to work through my thoughts is probably a good idea because let's face it, feelings can just be manipulative liars. 

 So yesterday ended up being a terrible, horrible, rotten, cruddy, miserable fail after fail after fail. The feeding pump got disconnected early, early in the morning and fed the bed instead of the baby. I left behind important paperwork that I have to turn in for foster care at our first appointment of the morning which is a long drive, I squeezed in to the doctor to get jellybean's ear checked and have her listen to his congestion just to be sure we weren't getting worse then I was hit with the fact that our EEG appointment was supposed to be at that time and we missed it. I had worked so hard to get that appointment and I fouled it up. 

 Finally, we get home and about 30 minutes later, jellybean's g-tube is lying on the floor because it came out somehow, some way I do not know. That was a panicked drive to the ER to spend 7 hours getting it put back in and getting an x-ray to make sure it is in place and did not damage anything going back in. 

 Fail. Fail. Fail. It is a loaded bat that I proceeded to beat myself with as soon as I jumped out of bed after 3 hours of sleep to get jellybean ready for his therapy visit this morning (which he did an amazing job with considering all things). 

 I want so bad to keep this little guy out of the hospital and the emergency room and yet, it happens time after time after time. Caseworkers are quizzing me on why he has to go back so much or informing me that they have never had a child get so bad. 

 Yes, please add some more weight to the bat and help me aim it at my head. 

 "Please, LORD, please. Just let there be a time that this is going to let up and there will be one small piece of normal," I beg. (I hate the word "normal" by the way so you can see my desperation)

 The reality is that time might not come and maybe I will not be the person they keep little jellybean with but Jesus is God and getting that right trumps all my faults, flaws, foibles, and failures. There I can rest my faith and trust that His will cannot be thwarted not even a smidge by my failing or wallowing. And, the best part is that it's not about me any way. So ha! 

 Now can I make my mind listen and not go back to sweating everything? I don't know but I could be in the running for "best wallower." Let's see if it is possible to wallow and read Psalm 96 over and over and while I'm at it, I could probably check in on some dear friends who are going through serious trials and could use encouragement and prayer. Sounds like a much better plan. 

Monday, March 23, 2015

Drowning Small Stuff in Sweat

  Yep, I used a cliché with a twist and I could throw in "It takes a village..." but I won't. Not in its entirety. This past week has wracked my nerves and it is really my own fault. I let it. Little jellybean wheezed and sounded congested and Bam! The anxiety level in my body shot up off the charts. 

 The oxygen did have to be turned up but then it got turned back down but then back up again and then down. Yesterday, I really, really, really just wanted to go to church but I was afraid. Fear of getting the little guy out and going back to the hospital was freezing me up. Then it hit me, "If he is already getting sick, there is nothing you can do. Go to church." 

 Thankfulness that I did overwhelmed even the biggest feeling of being disconnected and an alien because it had been so long that I had been there. It was a beautiful message from 1 Thessalonians. A message that my heart, mind, and spirit needed. But what to do about that awful worry? 

 Everyday the oxygen concentrator sighs like an exasperated mother and the pulse oximeter beeps sporadically like some wild jazz tune with no real beat while the feeding pump whines quietly in between it all and the worry about going back to the hospital was louder than all of it. I heeded its call to diligently use the "magic" inhaler and trust that it would keep the hospital away. And if that didn't work, use the other inhaler, too, plus the nose drops. Yes, the nose drops! They would surely work. Then my own theories - maybe he needs to work with less oxygen as much as possible so that his lungs "learn" to work better or maybe he needs more oxygen so his body can rest and heal. 

 So sad. See how easily I fall off the track? 

 Maybe the only thing I needed to do was stopping trying to control it so I did. I came home from church and threw out the worry. Yes, I am giving jellybean his meds as prescribed and no, I haven't quit keeping tabs on his oxygen. The difference is I stopped believing (for the moment any way) that any of those things are the answer. So my sweat level has changed and the only small stuff I am paying attention to is the blessings I can count. 

 God must have wanted me to test out my faith because it was a hard night of crazy oxygen dips and coughing and crying (not me this time). Before midnight the little guy was back up to his half liter of oxygen that we had weaned down from over a week ago. This time I prayed and trusted that God knew what He was doing even if we went back to the hospital.

 This morning was a new day. Jellybean awoke with his "goo" babble and when I peeked at him, he squirmed with excitement and the biggest smile. Strangely, his oxygen has been able to be turned down to less than a quarter liter and he is the happiest of campers right now. 

 Hmmm, I wonder what caused him to change so quickly? Not one single thing in my power, this much I know. 

 I will say to the LORD, “My refuge and my fortress,my God, in whom I trust.” - Psalm 91:2

 You can't trust a preemie, especially a 24-weeker, but you can always trust in the LORD.

Saturday, March 14, 2015

Home, Home Yet Again

 Home! Can I say it again? HOME! In one day shy of a week, we were discharged and I am amazed. The words to explain how unbelievable it is are beyond me. This time was so very traumatic. It was a night of terrible weather as ice was building up on everything and we had just finished prepping ourselves in case we lost power. We were settling in for a quiet night and just finished a snuggle session with the jellybean when we laid him in his swing. Ten minutes later, I am trying to convince the 911 dispatcher that I am in the county that I said I was and that the important detail was the baby we were holding who was in respiratory failure. 

 Respiratory failure. I see those words in his discharge notes and my heart aches. He was so small, his lips were purple. The slow ride in the ambulance through the ice was surreal. I remember talking  and apologizing for things but mostly feeling anxious that we were not moving faster and that the paramedic was not doing much. The ER staff was much more attentive and I remember saying more words, more information, anything that I thought would help speed things up. I heard "respiratory failure." I heard him cry in my lap and I squeezed him tighter. Left lung bad. CO2 extremely high. Cyanotic. Tachypneic. Apneic. Words, words all around about the small baby in my arms. The room was full of words and people. 

 It does not seem real. Three and half days later in the ICU and this small baby was laughing and playing and I was praising God. Unreal, miraculous. We had some frustrations in it but looking back, they pale in comparison. Every morning we get a smile as bright as the sun and giggles that are just as warm. My mind is just now starting to process the whole event. 

 Coming home, I was anxious and I laid in bed, praying for faith to trust God and just to sleep and KNOW He was in control. It took me longer than jellybean's ICU stay to get myself on track but here I am. I am home and it is not just a place where I physically live, it is a spiritual place where my faith rests in God no matter what happens.