Kyle snoozing in his new room - Level 2!
It is hard to give you a perspective on how big he is - he loves to sleep on his tummy - we will have to stop that when he comes home!
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.
Tues - I'm supposed to be paying bills right now. I was supposed to be doing that yesterday too. and the day before... spending time with the boys and john is taking priority - and so is blogging I guess. that is my mental sanity for now. I spent several hours just playing with the boys this a.m. I am still trying to balance my life, believe it or not. when traci showed up today the boys were not dressed, had not brushed teeth or done nose saline or washed hands and faces. hair was not done - neither were the dishes. and I was not dressed and ready! but we had eaten breakfast together, played this funny form of legos that make trucks and tunnels, put on a couple of magic shows, and ridden the tractor. then I went to see kyle and had a great surprise!
Kyle wears clothes now. He is 1510 grams and this means that they begin weaning his temperature in his fort. He slept a lot though b/c this is hard work to have to regulate your temperature. He was doing so good that Brandi said I could hold him. this was new b/c now we swaddle him and I get to look at him and talk to him while I hold him. much different than kangaroo care. Today he was wide awake! He looked at me while I talked to him and even when people would walk up he would look over at them. He can't see too well right now but sure enjoyed listening to us talk to him. He spent the majority of our time together trying to get something out of his pacifier! he love the purple pacifier!
they are talking about weaning the CPAP soon so maybe next week we will be back on nasal cannula. so now he is on a CPAP of 5 and is doing good. next they will go to a CPAP of 4 and then to nasal cannula. He will have another echo in a few weeks to check his heart clot and is still showing no signs of infection after his 42 day round of antibiotics. He will be treated with Lovenox (sp?) for 3 months starting from 12/3/07. This is to treat the clot.
Kyle will also be getting another EEG once he goes to nasal cannula. This will help the doctors make decisions about the seizure medicine that Kyle is taking. To get a better picture of Kyle’s brain the doctors will do an MRI when Kyle is bigger… closer to discharge.
So there is my update –that is what he is doing on now.
I am having a hard time keeping fear out of my mind. Kyle is doing so good right now that is hard for me to imagine that everything might not be perfect. When I was hold Kyle today and he was just looking at me with this look on his face that he really knows who I am… it was… I can’t describe the feeling. It was like a deep connection – I have been connected to him but it was like now he is connected to me. I could see in his eyes that he knew where he was – he knew who I was and whose arms were around him… whose eyes were looking at him and whose voice was soothing him. And he has probably always known but today I could see it in his eyes.
Now that I see this … it just gets more real everyday – our relationship grows – the thought of everything not being perfect becomes scarier. I wonder how much more I can ask God for.
What I mean by perfect is hard to speak as a mother. I love my children regardless of where they are brilliant and where they might struggle – but I want God to restore him to perfection in his mind. I want him to be brilliant. I want him to think, and contemplate, and reason, and deliberate, and lead, and create, and laugh – all of it. I want everything for him and the closer I get to this the scarier the thought of not getting it seems.
I am praying for protection from these fears – I heard the other day a mom in the pump room that just found out through the MRI that her baby has brain abnormalities. She thought he was fine. I find myself wanting to run out of the pump room and ask her “what was wrong with him… what did he have.. was he a preemie.. did he have a brain bleed?” but not out of compassion for her son but out of a desperation to make sure kyle didn’t have what he had. Could I be anymore selfish. Could I operate anymore out of fear? The doctors came into kyle’s pod the other day to tell a mom that her baby's brain was abnormal. And they would take her home and treat her normal and see what happened. This stuff is happening everyday there - maybe everywhere - I leave the hospital at night and hear the life flight helicopter and wonder how this can be real life for people. all the time someone in tragedy , how can people deal with this. and how can this be what God intended? hard for my brain to comprehend - I'm remembering that line that lady said in our blog - we need to abide. we need to realize that we are not God. we just aren't.
I beg you God to restore Kyle’s brain to perfection – give him the mind of Christ. Sharp and strong.
Wed - we met with some friends today at the hospital. They lost their son Matthew several weeks ago. He was a 23 weeker also. Precious baby boy - loved and longed for by mom and dad. still loved so much today too. It was so encouraging to see them today. encouraging to me that they care so much about kyle and about us. what true christ like love that they would ride the elevator, walk the hall, check in at the front desk, endure these terrifying memories just to sit and let us know that they care... about us and about kyle. they are praying for him. this is christ like love.
I can not even pretend to imagine how they felt as they made the trek, as they sacrificed, to come see us.
Kyle today - he will go to CPAP of 4 on Friday. Today I got to hold him again - so did dad. and today he smiled at me - (I know it is gas) ... you know that new born grin, looks just like they are smiling. He is really starting to look like a tiny newborn! also tonight he had gas pain - he would cry out and then toot - hard enough that I could feel it through the swaddle! Kyle also got ANOTHER good eye report today. No ROP so far and no plus disease! this is really good!
adorable. please always keep praying for his brain and eye development. asking the lord to protect his digestive system and restore his heart.