Oh, what a night

It's still Thursday


Yep, I'm a bit tired this evening. It's 11:02 pm and Nic & I have just returned from the hospital.

You may have heard of spiritual warfare. Our weapons of warfare are found in the Wisdom of Christ: God's Word & Holy Spirit. Battles are ongoing around us all the time - the Kingdom of God versus the enemy.. but by golly if it isn't real! Tonight, I prayed so hard, so many times, called upon the Lord, the Holy Spirit, the angels of Christ,, and rebuked the enemy so, so, so many times that I literally felt phyiscally exhausted when we left. It is through nothing but the sheer strength of Jesus that is sustaining me at this very moment.

Here's why:

As you all know Cayleigh had her spinal tap this afternoon. (see previous post) We came in tonight and Maria, the short, pretty, petite Asian nurse we have had a few times, was taking care of our sweet Cayleigh Jean. Daddy and I prayed over her as we always do. This time, however, Daddy noticed that she was doing alot of shaking. Her arms, legs, her little upper body. We asked Maria about this - is it an affect of the spinal tap? I assure Nic that it isn't but we listen. Maria says no. Nic notes that Cayleigh feels cold. Maria tells him that her temp was a little low, 97.5 but she had turned on the bed warmer. Earlier in the day, Sheila had turned the bed off because she was getting too warm. So imagine this little baby, laying there with the bed off (I'm assuming) with nothing on but a diaper. Naturally her body temperature was a little low... mine would be! I didn't ask if the bed had been off the entire time but in retrospect I wish I would have (how many times does that happen to you?) I pray over Cayleigh and pray that the Lord stop her shaking. The other nurse, Tami, tells us that in preemies the neurons in the brain are still undeveloped and so sometimes they do the shaky thing without meaning to. I feel peace with this. I look back at Nic as he tells Maria (and this all happened so fast the details are a bit blurry) that she is refulxing. Maria comes over and suctions her mouth. Her O2 dropped, heartrate dropped, then they get it back up.

Maria gets the Smart Dr for us because we want to talk about the results of the spinal tap. The spinal itself was good, normal results, her protein is a little high and her blood sugar is a little low. We want to ask him about this. He arrives at her bed and Nic and he are talking briefly when Cayleighs heartrate drops again and her O2 goes down. She is refluxing again We ask why she is laying flat. She is supposed to have her bed elevated because she had that apnea/reflux/heartrate drop/temperature a few days ago and they decided upright would preven the reflux. (and it had thus far) They tell us that she is flat because if they try to reposition her before 8 hours has passed since the spinal then fluid can build up in the brain (or something along these lines) and cause leaking in the spinal site and can cause injury basically. Not good stuff to sum it up. Nic asks why they didn't stop the feeding then. She is getting 40 mls and she is refluxing it all up. Meanwhile, Tami has stationed herself at Cayleighs crib because she keeps refluxing/O2 dropping/heartrate dropping. She does it out of her nose at one point too. I pray over her, I pray I pray I pray. Then, I suddenly get overwhelmed and tears flood my eyes. I have to walk out of the room.

Maria tries to stop me to ask if I'm ok. She is telling me this is really hard. It's never easy she says. I walk out and sit in a chair nearby. I pray. I pray so much and so many times I can't recount what I said but basically normal stats. No more reflux. No more decels. Protect my baby please Lord. Protect all of the babies. Peace and patience for me and Nic. Guide the nurses and doctors Lord.

I come back inside. Tami is still closeby Cayleighs crib and tells us she is going to call the doctor. She wants to do something with the Gtube (feeding tube in Cayleighs belly) to get all the remaining feeding out of her tummy so she stops refluxing so badly. She tells us that Cayleigh did well at Noon, at her 4'oclock feeding after the spinal and that this is the first time she has been having problems after this 8 pm feeding. The little baby to the left of Cayleigh would couldn't weigh more than 2 lbs starts to desat. I hear beeps all over the place. I'm in the center of the room now and I just pray for the HOly Spirit to enter this room, to abolish the enemy, that the angels of Jesus Christ stand guard around and protect all of the babies in this room right now and protect them from the enemy.

She stabilizes the baby. Then Tami suctions Cayleighs mouth again. Thick secretions. Stupid secretions. She keeps the little arm thing open and asks me to stay next to Cayleigh while she is talking to Smart Dr. She's talking to him and she asks Maria how many ml's she is on. I quickly say 40 ml. She repeats this to the doctor. I feel a part of Cayleighs care. Nic and I both are - we know as much as we can because we feel its important. I interupt her - Cayleigh is refluxing again. Each time she refluxes her heartrate drops and so does her 02. Its terrifying. She rushes to my sweet Cayleighs aid. It dawns on me that she saves my babies life over and over. All of these nurses do. Praise God for these men and women.

Eventually Dr Smart is at the crib again. He gets pretty angry with Tami for continuing to suction Cayleighs mouth (from what Nic says... I'm still on autopilot). He tells her to incline her bed. I mouth to Nic "Ask Him If He's Sure". Nic asks Dr Smart if he's sure. The nurses have been saying she has to be on her back for 8 hours. Dr Smart asks Tami when the spinal tap was - she doesn't know and I check my phone quickly. 7 hours I say. My phone tells me how long ago someone called- and I have the call that Sheila made to me right before the spinal tap on my call log. Ok. He says her airway being clear is the priority here and that she will be ok. 7 hours is close enough to 8 says Tami. Nic looks at me and tells me Cayleigh is going to be just fine, nothing will be wrong. I ask if he's confident of that and he says yes. I trust him. He is my husband. But moreso because he is her father.

They incline her bed and I pray over her again. Lord let there be no bad consequences. Lord let her be healed. Lord normal stats. Lord let her be peaceful and strong. Lord let her be comforted. I pray pretty much the entire time we are up there. I rebuke the enemy. If he had a face I'd drop kick him right in it. Her stats beging to be stable. Nic notes that she is having alot of residual in her tube thingy. The nurses say that is ok. Its alot of air from her belly and that is a good thing. We want the air out.

Tami suggests to me that I start writing down everything I eat so we can know what food is associated with each feeding. I ask if I should take all the milk from the fridge and they say no. From now on though we will keep tabs. Stay clear of broccoli. Stay clear of spicy food. Since we time and date every pump it will correlate with the food diary we will keep. Ok I say. Then I ask about the antibiotics I'm on. I'm not taking one of them because the pharmacist suggested we don't do that. He told us that it isn't good to have in breastmilk and its a level 3 which is has unknown side effects in breastfeeding.

Tami goes and gets a book about how drugs affect breastmilk and the babies. She goes through and finds both the meds the doctor had prescribed me. The one the pharmacist tells me not to take (antibiotic) and the other one (antibiotic). She says both are ok. I still am not going to take the one the pharmacist told me not to take. Why? Because I would rather get an infeciton in my incision than have my baby in any way be affected negatively. She is my world and that "ok to take' antibiotic will just have to do.

Anyhow, I've written an awful lot. Cayleigh ended up being much more stable and didnt have any more desats the remaining time we were there. We feel so totally grateful to everyone for your prayers and to the nurses and doctors for their help. We are just so blessed depite this storm.

We pray for NO reflux. NO desats. NO problems. Normal O2. Normal heartrates. Swallowing. Sucking. COMPLETE HEALING IN JESUS' name.

By the way - Cayleigh COUGHED twice. The nurse and doctor say that is a good sign. She's clearing the airways herself - or trying to. Also, I swear I heard a little normal baby sound from her too when I first had arrived.

Please also pray that she cries. Please pray the the people at UCSF take one look at Cayleigh and know what is wrong, fix it and we get her home!

Thank you all and God Bless

Here are some pictures from the earlier visit...