Kyle is doing good today. He is down to a CPAP of 4! This is a great step to Nasal Cannula which looks like it is coming on Monday. Please be praying for Kyle this weekend. We are asking Jehovah Rapha, our healer, to strengthen his lungs so that he will have what it takes to go to nasal cannula. He had a several de-stats today (this is where he is not able to oxygenate his blood sufficiently). these need to subside for him to be able to go to nasal cannula - a big step that we are really excited about! other than that - kyle will be getting another echo soon for to look at the pda (which they believe is closed) and also to look at the clot in his heart. as of now they think the clot has turned to scar tissue. kyle gets a shot every night of lovenox (sp?) to keep the red blood cells from clotting around the scar tissue that is in his heart. They will re-evaluate at the echo if the clot is there or not, growing or shrinking. Please keep praying for kyle's IVH (this is the bleed in his brain - bilateral grade 3) - last ultrasound showed that the blood was "clinically" moderately reabsorbing. our doctors word was reabsorbing with no clots or PVLs. I have been told by the doctors that all bleeds reabsorb - we need to be aware of what they leave in the wake. so far so good here but still some steps to go. i am not sure when they will do another ultrasound - they may even just wait for an MRI. they are not doing these things in a hurry b/c this test does not change any course of treatment. they are for diagnostics only. to help parents understand what hurdles might be ahead. funny how those explanations are full of "i don't know"s. Kyle will also have an EEG as soon as he gets on nasal cannula - another reason we really want to be there. this will help the neonatal neurologist in determining if they think kyle is having seizures still - please pray! if he is not they will try to wean the Phenobarbital. this will be great - it makes me nervous have kyle on a medicine that sedates his brain. however seizures are not great either so I understand - it will be great though if he can come off and still be seizure free. these are the big things right now. and I pray a guard of protection over kyle's body from infection.
i wonder if my praying confuses God. one day i beg you in prayer and in the next breath i am wondering and frustrated at the work of God or what seems to be the lack of work of God. I don't feel like my faith has been shaken in who God is. but everything i think i know of God seems to be wrong?. very confusing - I have a whole know outlook on the verse that says "I believe, will you help me with my unbelief." i think i might know how that man felt.
Another one of Kyle’s pod mates died the other night. I had only seen his father once and I had never met his mother. I can't convey in text how that grieves me. actually it makes me mad. I watched him every day - the nurses cared for him everyday. but we can't hold him. I can't open his doors and tell him it will all be okay. We can't let him hear that one voice that he knows and surely brings comfort. the only one thing that he could know and find comfort in. So angry - I keep reminding myself that I can't judge b/c i don't have a clue about his mom or dad or what they may be going through - but none of that makes it okay for this little man who needed someone. He was held that day, the day he died. but that was the only time he had ever been held. He was a another 23 weeker. To see how hard the doctors worked to save him – it is amazing.
I can’t believe this keeps happening. These little babies – so tiny – so helpless – really helpless. I watched the doctors fight for him. And I really mean fight. They try every angle, every effort, every medicine that they can, every combination of medicine, every hardware – they would huddle and discuss, then walk away and process, come back and work. They show concern but amazing strength. They display wisdom and yet stay compassionate. The nurses work tirelessly. Consistently.
One night I saw a nurse working on one of our little 23 weekers for 2 hours past shift change. I heard a story of a nurse today working minute by minute with 2 other nurse all on one baby. Today I saw a nurse reading and searching for as much info on her patient as she could find. A rare disorder that the doctors were looking at. They work and serve. These doctors and nurses get a paycheck to do their jobs but they go above and beyond that – they use their efforts and experiences and time and energy to stir and think for our kids. Not even their own. I am constantly humbled. That was not a cliché. I am humbled. And I am amazed.
another little one has taken the bed space of the one who just died. he is not doing so good - i couldn't share his name with you if I wanted to b/c he doesn't have a name card. actually he does but it is blank. as the nurses were talking about why - one said that they mom had been asked by transport if he had a name - the mom told the nurse what it was but nothing was in writing. no name in writing. and the nurses weren't really sure b/c they had never seen mom or dad. never heard from any family by phone. so for 3 days now - no one has checked on this little one.
sometimes I think that people think it is not that big of a deal b/c these are infants, like this is easier b/c they are so young or would be worse if they were older. I'm not sure how to think through that - well maybe they are not even infants yet - they are supposed to be babies in utero. but these babies are made to be loved. to be talked to - even in utero I can remember my boys jumping about when john would lean down and talk to them. they come out ready to be held and ready to be loved. i beg God daily that these kids would be held by God's very breath. that they would be cradled and one day have an UNUSUAL sense of our God!
I'm also praying for Coy tonight. God would you breathe your healing breath into Coy's lungs and as he exhales would you remove the fluid and extra CO2. Would you comfort him. Let your mercy fall - let them fall on Kyle and Coy - they truly are waiting for you Jesus, waiting for healing.
i wonder sometimes if is okay to seek the hand of God so much. but I do. please help us God. I give you praise for the days you have blessed us with these babies. Ann Marie made a huge impression on me when she wrote of how they are yours - given to us to care for. and I know we want the same thing - to keep them! We want to keep them with us. God would you give us visions of our children - running, playing, perfect.