Somebody let me off this ride

Sunday, February 27th 2011

The summers of my youth always consisted, like many Ohioans, of a trip to Cedar Point. If you are from Ohio - or love roller coasters in general - then you've probably been there. The place is bigger than life with dozens of roller coasters that are sure to make you squeal with delight..or horror. In the end, though, it's always a great way to spend your day.

One such ride that came to mind earlier today was the Mean Streak. This particular ride is old, rickety and sure to give you the headache from hades. It's up, down, shake shake shake.. you're enjoying yourself (sorta) yet you feel your brain bouncing around so forcefully it makes you wince.

The past 10 days has been like a roller coaster. Today, however, has been a Mean Streak kinda day. It made my brain hurt. This day was so enthralling, in fact, that there were times I very nearly couldn't handle it. Much like my amusement park comparison, this day has left me so full of adrenaline it may be hard to sleep tonight...if I hadn't taken a Benadryl anyhow.

Enough of the introduction.. here's my day:

Around 9 am I called NICU to check on Cayleigh. I end up speaking with a nurse whose name I don't recall. She is taking care of Cayleigh today. Good news she tells me. It's a very exciting morning for Miss Cayleigh mom. The billirubin test came back and the results showed that she is at 9. The doctor has ordered that the lights and billirubin blanket be removed. That means no more glasses or lights mom, isn't that great? Yes! She goes on to tell me more. The doctor has also ordered that we take her off of the Flow Nasal Cannulus. So they're taking her off the oxygen? Yes, well it isn't really oxygen more of just a flow to remind her to breathe really. But we're giving her a loading dose of caffeine. Wait, did you just say caffeine? Yes, well its really not a big amount but it will help her to remember to breathe and wean her off the nasal cannulus. I figure that the doctor must know what he is doing & say Ok. I tell Nic the great news. I thank God. For some reason, however, her being taken off of the O2 doesn't sit right with me. I give praise to the Lord in spite of myself. She hasn't had any residuals and no reflux. We have her bed up to hopefully prevent reflux and so far so good. Will we be seeing you today? Yes, we'll be up in the afternoon. I ask her when her feedings are this afternoon. 1:30 pm - we'll be at that one after church. Ok, she says. Can you call me if anything changes? Sure, she says. I give her my cellphone number. Thanks. No problem, we'll see you then. We hang up and I begin getting ready for church.

Fast Foward: 1 Cayleigh NICU is calling my phone. Is this Cayleighs mom? Yes it is. Hi, it's "ENTER NURSES NAME YOU DONT REMEMBER HERE". Hi, how are you? Good, thanks. Listen, I wanted to give you a call. Cayleigh was off the O2 for about an hour and 40 minutes and her O2 went down. She ended up having 3 Apneas that were pretty significant in a row so we put her back on the Nasal Cannulus. Is she okay? Yes, she is ok now. We only have it on 2 liters (it was 3) and we're watching her. Just wanted to give you a call and let you know. Is everything else the same? Yes, it is. Ok. Thank you for calling, please call me if anything else changes. We'll see you around 1:30. Ok, will do. See you then.

Church comes before we know it. Nic and I are talking to Pastor John. He lives in Manteca and would be able to come lay hands on Cayleigh in Stockton at St Josephs. Terrific! Nic & I had talked earlier and wanted to speak with the pastoral staff today to ask them to come pray over her. The schedules don't work out for us until this coming Tuesday. We will see him Tuesday morning. We're so grateful. We tell him the whole story (well, as much as we can) and he listens patiently. We grab hands and he begins to pray. I feel myself a little light and hope I dont fall over. I get Holy Spirit goosebumps. God is so good.

We leave, grab some McDonalds and head toward the hospital, all the kids in tow. We have to travel back to Mountain House, then past it and toward Stockton. Thank heavens for the DVD player in our van. *sigh*

We get to the hospital and Nic lets me out at the front. It's my turn first he says. He takes the kids, the van and is off the park. I'm so excited I nearly run. Shuffle Shuffle Shuffle. I reach the NICU doors, sign in, wash up and head to my sweetheart. Her eyes are wide open. I meet the nurse. Late 40s, chin length dyed blonde hair that is straight. Great makeup. She tells me her name, I don't remember. I'm busy looking at Cayleigh. Her eyes are open. She looks wired. Her heartrate is at 170s. I ask the nurse about this, she says its normal with the loading dose. Loading dose just means the very first dose given of a medicine. She tells me that over the next couple days she will get a maintaining dose which is not nearly as high. I'm thankful Cayleigh isn't wearing her sunglasses..otherwise she'd be looking at a thick, black sunglass thingy. The nurse tells me she's just eaten. (feeding tube) She gets her ready and I unpack 4 bottles of milk plus a storage bag. I sit down, she asks me Skin to Skin mom? Yes. I pull down my shirt and she is laying on my chest. Listening to my heart. I rub her back, kiss her head, play daddy's recording of There's a Nightmare in My Closet, attempt to work her left arm and I rub her feet and lower back. Her eyes are wide open. I tell her I need some of what she has. I yawn. I sing to Cayleigh. I pray over her. I pray with her. We talk about alot of things.. she's the silent type though so it was mostly just me. I tell the nurse I need to switch with daddy. She is busy feeding baby in Crib 1 and calls another nurse in. This is a tall, slim Asian woman with short black hair. She takes Cayleigh and I quickly get dressed and head downstairs. Nic is up in an instant and I sit with the kids. Bathroom trip. I get out of the bathroom and Nic is standing there.

He looks upset. What's wrong? He tells me he only got to hold Cayleigh for all of about a minute before she had reflux in her mouth and nose. She threw up on him. He says she Desat'd a little bit while she refluxed. Poor daddy. He's grumpy now. I would be too though... holding her is like heaven. He just got a teaser. Poor thing. We head to the van, load up the kids, turn on All Dogs Go to Heaven and head home.

Fast foward.... I walk in the doors at the house, go to the bathroom and find a project I want to work on online. Prayer pockets. What a great idea. I can spread the word of God to other mommas by making these for my other NICU moms. I get a bunch of ideas. Then, the phone rings.

1 Cayleigh NICU. Why are they calling? I dont have time to even think is it good news or bad news - I just pick up. Is this Cayleighs mom? Yes. Hi, its "Nurse" (I told you, I forgot her name). Hi, whats going on? Is everything ok? Well, mom thats why I'm calling. After you all left Cayleighs O2 stats went down and didn't really come back up. *head foggy..dizzy..what is she saying?* Her heartrate is up above 200 and she has a fever of 100. We are transferring her to the big room right now. I've called the doctor to let him know. Do I need to come back up right now? Do you think I should? Yes, I think that would be a good idea. Ok. We're coming right now, I just need to find someone to watch the kids. Okay. Keep me posted. Okay, I will.

Heart racing. Tears start falling. I pace. I pace from the back of the house to the front. I holler up the stairs. "NIC!" He's in the bathroom. NIC! He answers.. I need you to come down here NOW. I'll be right there. I try calling my mom. Voicemail. I try again. Voicemail. I call my dad. he's working. What's wrong? I tell him briefly I need to go to the hospital, we need to leave now. I need her to answer her phone. He says I could go. I'm shaking. I can't drive myself. I hang up on him hastily saying something about I need to get ahold of SOMEBODY. I'm at the bottom of the stairs. I wait. I pace. Nic comes down the stairs, I tell him just enough and say to go get Cynthia & Antonio and see if they can watch the kids until my mom comes. I dial the 24-7 emergency prayer line Pastor John just gave me earlier at church. I walk out the front door. I don't remember him leaving but Nic is gone. I'm outside my house, pacing. I leave a message on the prayer line. I pace more. I walk back inside. Tayla comes downstairs. Its supposed to be nap/rest time. I tell her to go upstairs and pray for her sister right now. She asks whats wrong. I tell her cayleigh isn't feeling good. She should pray. Prayer is powerful. My phone rings. It's a pastor. Pastor Kim talks to me. I tell her briefly what's going on. She tells me she will leave right now and meet us at the hospital. I thank her. Hang up, tears falling.

I walk to the couch. I drop to my knees and begin praying. I'm praying and speaking healing over my baby. Verse after verse. Shooting pain goes up and out from the site where I got my spinal. I put my left hand on the pain and press on it and continue praying. This isn't about me. Claiming life. Authority over this baby. Thank you Lord for giving her to us for this time on Earth. Thank you for every breath she takes. Heal her Lord. A thought comes to my mind. I need to post this on Facebook so everyone else prays. I get up quickly(ish). I head to the counter. Just enough battery left on the laptop to post. PRAYER IS POWERFUL I think. Caps locks. They'll see it.

I'm pacing back and forth in the kitchen and hear the door open. There is Nic, Cynthia is behind him. I'm standing in front of the mirror. I wasn't looking at it. Not sure what I was doing. I look over my shoulder and Cynthia is at my side and opens her arms. She hugs me. "I'm praying for her Sam". Tears fill my eyes. So am I. Thank you.

We leave, quickly. In the car. Nic drives. I'm lost in the Spirit. Praying the entire trip. I have my Bible. I'm praying the entire time, speaking in tongues, lead by the Spirit. Tears in my eyes. I am not afraid. I am praying. Kick rocks Satan.

We arrive at the hospital. I'm still praying. Nic lets me out. I almost bypass the security guard. PASS, NOW. I think it , I don't say it. Elevator, Press 2, ding. Open, shuffle shuffle shuffle. A nurse had just walked in, the doors are still open to the NICU. Shuffle Shuffle Shuffle Shuffle.. I make it. Hastily sign in. Screw washing hands. I'm down the hall in record time. "Do not fear what you see" The Lord has spoken clearly to me in this. I walk to room 13, the nurse (a familiar face, a name I dont recall) answers. She's not in here honey. I walk to the next room and look in the door. 4 nurses stand over a crib. This is the room. I knock.

The short, gray haired older nurse let's me in. I walk to the 1st crib for some reason and see a teeny, tiny little bitty baby. My mind is in a cloud. She shrunk? No. That's not her. "over here mom". The 4 nurses are over her crib. I hear beeping. I look only at my babies face for half a second and see a huge contraption over her head. CPAP. I don't look. I drop to my knees on the cold, hard tile at the end of her bed. Nurses are working, talking. Beeping, loud beeps, short beeps, suction sounds. I pray. I put my hands on the crib and I pray. I shake. I am deep, deep, deeper than I've ever been in prayer. I pray in tongues out loud mixed with spoken words. Noone else exists. I pray so many things I don't recall. Except that I pray for Him to guide the nurses and doctor in caring for my baby. I continually pray life over my baby. I being praying over and over, Lower heartbeat. I look up and it's 210. I pray harder. Over and over. Sometimes in tongues. I pray and my hands shake. I cry. Tears fall. I pray so hard it almost hurts. Lower heartbeat. Stable oxygen. Stable stats. Life. Life. Life. Angels of Jesus surround my baby girl and protect her. Lord a hedge of protection and shield her against the enemy. The nurse says something like "Mom, when you're done I'd like to go over what's going on with you". I dont turn around. I dont acknowledge her. I pray. Over and over, harder and harder. Noone else matters.

I sense Nic. I hear his voice. The nurse gets him to come to her and starts going over whats going on. Blood work is out, X-rays, CPAP for oxygen to her lungs, heartbeat is high. They are talking. I barely hear them. I pray for nearly 30 minutes (it seems) and hear the nurse. The blood test is back. A 'general" test thing that shows if there is some kind of infection came back. Normal is <1. Hers is over 3. Infection? I pray harder. I tell the infection that my God is mighty. Greater is He that is in her than He who is in this world. I tell the infection God is going to squash it. Nic comes to Cayleighs side and is talking to her and I rise minutes later.

I look at her. Her color is pale. Her face is squished together by this CPAP thing. It's stuck up her nose. Her eyes are still open but look like she's exhausted. Her chest is up and down rapidly. I look at the heartbeat. 200. I give praise to God. I pray again, lower heartbeat Lord Jesus. You are the Great Physician. She looks nothing like the baby I held just hours earlier. Poor, sweet baby. I lay my hands on the crib and pray more. Daddy is telling her she is strong. She is a fighter. She is his princess. She is a fighter. I watch the heartbeat. Stupid heartbeat. Marina tells us no holding her because she isn't stable. They also dont want us to touch her because it may overstimulate her. Not until she's more stable. She walks away to check on something.

The short, gray haired nurse comes over. She opens the hand hole on Cayleighs crib. She looks at me. I just thought you might want to put your hands on her. Then she walks away. I look at Nic. But the nurse just said no touching her. The short, gray haired lady turns around. She looks at us both. She says, I think it will be ok.

Marina is the nurse thats taking care of her. She cannot tell us whats the diagnosis but she has called the Dr. He will be calling soon. Cayleighs heartbeat starts lowering. 190s. I continue to pray. Praise you Lord, thank you. I keep praying in my mind. I hear them talking. Her white blood cells are still in the normal range (5-20) but are at the low end. 6.5 This shows there is an infection. I hear the words bacterial. They eat the white blood cells. I rebuke it. I refuse to claim this. I pray. Heartbeat to 180s. Doctor calls. Start 2 antibiotics. Marina and another nurse are at Cayleighs crib.

I am singing to her (Hallelujiah Christ is Lord), and Marina asks if I can leave the room. I look at her. I had a dad watch me give the baby an IV earlier and he almost punched me. I dont want you to get upset. I comply. I don't like it , but I do ..but not before I put my hands on her again to pray.

Nic and I are in the hallways sitting at the table. He says we will stay until she is stable. Maybe walk across and get something to eat from the cafeteria. He calls his dad and asks me to call the pastor to see how long she will be. I do and she is only 1/4 mile away. I give her the info. Nic walks down the hall a bit to talk to his dad. I'm doing something and Nic tells me we can go back inside now.

We go back inside. I stand at her crib with Nic and we pray. the chest x-ray came back. Fluids in the lungs. The nurse said, without saying, pneumonia. The antiobiotics will be on for 7 days. There's 2 different ones to make sure whatever is making her sick is squashed.

Just then Pastor Kim is at the door. The nurses let her come in and the 3 of us put our hands on her and pray over her briefly. They've closed the curtains around us for 'privacy'. We don't touch her for too long so we don't overstimulate her (*rolling eyes*) and then Nic says we can talk more in the hallway.

We go over the story, we pray, talk about how this experience has changed us and what its taught us so far. She offers her help at any time. Just call me. We all walk downstairs together so that Nic and I can walk across to the cafeteria. She walks with us and we talk about being married, how long, and about her husband and herself. We're incredibly grateful to her for coming out. she is truly kind and we're certain it's made a difference having her there to pray over Cayleigh with us.

Nic and I 'eat'. He has a small sandwich, bag of doritos and a soda. I have a lousy potatoe soup with crackers and a water. We dont talk too much. When we do, we say we'll head home after this (if she's stable when we get back). we agree. We're both exhausted mentally, physically, spiritually and emotionally. Still, though, we are in this together and love one another more today than yesterday, so thats something. :)

Back at the NICU Cayleigh is stable. Heartbeat is back in the 150s when we get back. O2 at 100%. We meet Maria. She will be taking over for the evening. Nic tells her to expect calls from us..alot. Her temp is 99.2 now. I tell her to expect it to keep being lower and then normal. I pray stability over my childs vitals. We all say goodbyes and then double check the room phone number.

Long story short, we're home. It's 12:02 a.m.. I'm tired, Nic is tired and it's time to pump (and not iron).

Pray for our sweet Cayleigh Jean.
Pray for stability in her stats.
Pray for her to be off the CPAP soon
Pray that the antibiotics work perfectly
Pray the the secretions in her lungs disappear
Pray for complete and total healing.
Yeah, that last one will work. Thanks all.