Time & Prayers

Wednesday, March 09, 2011

I'd like to start by sharing an e-mail I received tonight after arriving home from our visit with our precious Cayleigh Jean. This message was sent at 11 am this morning. We arrived at the hospital around 10:30 and were probably hearing the very loose basics of what the doctors were going to meet with us to discuss later in the afternoon right around 11.

"Hey there! I have been praying and will continue to pray. Please keep in mind that though our faith may be strong, our ways are not always His ways. Her healing is NOT based on the strength of your faith, it is based on God's will for her ilfe. Jesus taught the disciples to pray and the prayer He taught them was "Thy Kingdom Come, Thy Will be Done". He didn't teach them to tell God what to do, He taught the disciples to ask for and accept God's will. That doesn't mean that His will isn't to heal Cayleigh completely to bring glory to His name, but if His plan for her life is not what you want, it doesn't mean that you didn't have enough faith. He knows your heart, He loves you and He has a plan for all of you. Praise Him in all things. Jesus himself asked God to take the cup from Him of what was to come, but then ultimately He said "Thy will be done".

How divinely inspired this e-mail was I cannot explain. It just was.

When Nic & I arrived at the hospital today, we came equip with breastmilk. All frozen but 1 can that was fresh from the morning. During check in we completed the forms that ask several questions about your health within the last 24 hours, the RN at the check in desk does an assesment of your health and then you can go in (or not I suppose) to see your baby. This is the ensure that all visitors are healthy. I like the system. The badge they give you has 2 layers. The top layer is white, with black lettering stating that you are a PARENT/GUARDIAN. The nurse writes the baby last name and such with a sharpie marker. Beneath this layer is a bright pink layer that reads VOID all across it in several different places. The top, white layer fades (and as the hours progress you begin seeing VOID coming through) completely within 24 hours and this is an indicator to the check-in nurse that you need to be reassessed. Pretty cool

We walked down a long hallway and take a right to drop off our milk at the "milk station". This is a desk staffed by at least 1 nurse. There are files, a large dry eraser board that spans the entire wall with different unit names, bed numbers and the last name of the baby there. Some of the names have an orange sticker that reads "NAME ALERT". Later, I find out that this is for babies whose last name is the same as another baby within the unit(s). For instance, if there are twins, they'd both get one. If there are 2 Ramirez babies, even though not related, they both get one. This is to make sure the right baby gets the right meds/milk/etc.

We check in and are told to log our milk in and put it in the paper bags by the RN. This is very, very vague. We are intimated by a large refrigerator with a glass door that has several wire racks and little baking tray type things on them. On those are brown paper bags with last names/dates and a time on them. There is a mom standing there logging her milk in. "Trying to check in your milk?" she asks us. We obviously look like rookies.

She walks us through the process. Write the last name on the bag, put the milk (with labels, last name, time,date on them) in the bags. Put the frozen milk on the racks for frozen, put the fresh milk on the rack for fresh. Log them into this chart here (she picks it up) and make sure to put all that info plus when you logged it in and how many bottles there are. This seems complicated. The RN asks us if the nurse needs a bottle now. I say I don't think so but I don't know. She ends up coming over and telling us to just take the fresh milk bottle to the nurse because they'll be feeding her. She had been on just a sugar solution/yellow stuff and the white stuff again via IV because they had done the MRI.

We walk down another long hallway, scrub in (with a complicated surgical tub thing and foot soap pumpy thing), walk through rooms of babies in blue cribs and then get to the back where our baby is staying. There are 2 other babies in the room. Cayleigh, and her friends, all have plastic tub beds. There isn't a top, just a warmer thing. The babies here are still getting tests done, evaulations, etc and so they aren't in the blue cribs until those are done.

We walk to yet another sink. This time we open the small packages we were taught to use on Monday. They have a little scrubber with bristles on one side, a harsh sponge thing on the other and a little plastic toothpick that you use to clean under your nails. You scrub all the way up to your elbows, removing any watches or bracelets. Clean under your nails too. Then you can go touch the baby.

We walk over to Cayleighs crib and she is sleeping. We pray over her and talk to her. The nurse, Linda, comes over and suctions her. She still sounds really congested. We ask her to suction her again. She's an older lady, we find out that this is her last day and she'll be off for a month. She seems to be frazzled today. She says "ok" and suctions her. It doesn't really sound any better. As her mother, I wanted to grab the tube from the ladies hand and do it myself. The nurses at St Josephs, well, most of them, suctioned her and she sounded fine. This lady is half-hearting it in my opinion. We stroke her head and talk to her..just happy to be in her presence. Just then, Dr. Fernando comes over.

Just before scrubbing in Nic had caught him in the hallway and asked if he could just give us a quick overview of the tests. I was in the bathroom at that time. I guess he was going to but said he'd catch up with us after he was done doing something else. So here he was now, he grabs a chair for me. He grabs another chair. Then grabs one for Nic - but Nic said he'd rather just stand. We're going to talk right here, next to Cayleighs crib.

We sit down and he tells us that there is something wrong with the left side of the brain in Cayleighs MRI. He tells us that it is smaller than the right side of the brain. He says this is because she has had a stroke while in the womb. I ask if there is something I did that caused this. He says no. He continues on to say that the neurologist and himself will meet with us at 2 to discuss everything in more detail. He does tells us that this is why the right side of her body is so stiff and rigid. The left side of the brain controls the right side of the body. He has another meeting to get to and Nic and I calmly thank him for his time. We look at Cayleigh, hearts slightly broken.

We stroke her little sweet head. The nurse then asks us if we want to hold her. Yes, I say. I sit down in the rocking chair next to Cayleighs crib and I hold my sweet girl. She's getting her feeding so I have to hold her so she is 'laying' on her right side the nurse tells me. She says that when the baby is feeding its best to have her lay on her right side because thats the way food empties into the stomach. I ask her if I shouldn't be holding her upright with her head on my chest since she's getting food. She tells me no.

So I hold Cayleigh and I talk to her. I stroke her sweet little head and I just look at her. I am in awe of how amazing she is. I pray over her. Mostly, I sing to her. Lullabye & goodnight, Jesus loves you and anything else that comes to mind. While I'm holding her, the nurse comes over to check on her. Her O2 has gone down a little into the 80s so she repositions her on me. She tilts her head up a bit. She asks us if we are going to be getting lunch and we say yes. She says something and then says that she will arrange to have the casting done later then.

I ask her what she is talking about. Then Linda tells me that the 'casting' to be done if for her leg and hips. She says that they are going to be fitting her for a cast and harness for her hips and right leg. Oh. I kind of tear up a little. I hadn't when Dr. Fernando said she had an in-utero stroke but the casting gets to me. I visualize her sitting there in casts on both of her legs and it chokes me up.

I sit holding her, rocking her, and her O2 goes down yet again. I get frustrated and ask Nic if he wants to hold her. It seems a bit too overwhelming for me. He tells me not to give up on her. I'm not. I'm just frustrated right now. I adjust Cayleigh myself and put her head up on my collarbone and rock her. I lay my head on hers, close my eyes and start singing my lullabye to her. I'm rocking and smelling her sweet head. I open my eyes and Nic is standing near me - I tell him its not his turn yet. He smiles.

A short time later I tell Nic we need to get have lunch before the appointment. I've been holding her for an hour by now and it's almost 1. Nic needs his time too. The nurse comes over and holds Cayleigh so that we can switch. He holds her for about 30 minutes, and she didn't desat 1 time. :) We lay her down in her crib and walk across the street to Panda Express for a bite to eat. Hint: Don't eat there

After our 'lunch', we walk back to the main hospital. By the way - all of the hospital is in different buildins or cannot be accessed by the same evelators. For instance, the parking garage, foodcourt, etc is in the one building. Then you've got 2 other huge buildings within a block that are also the hospital. Then in the one Cayleigh is in you can't get to certain levels/floors by certain elevators. Ours, for the NICU, are the elevators at the WAY back of the building all the way down the never ending hallway. And there are 4 elevators but you have to wait, and wait and wait for one to come down. *sigh*

We get back upstairs. I notice the pink VOID is starting to show through my badge and Nic's. We go do the whole process again (scrubbing in, checking in) and then get to Cayleigh. I stroke her head and then we put up the new toy Nonny got for her that I wanted to buy. It's the Fisher Price Waterfall Soother. I talked before about wanting to buy her the aquarium for her crib because she loves 'her lights' - but they didn't have that so we got this one. 4.5 out of 5 stars when I googled its reviews. Its perfect. The monkey, fish and tree frog move in sequential order, the lights move onto each one and the whole time there is a blue flowing waterfall, the lullabye music and rainforest sounds. Earlier, Dr. Fernando had mentioned how they were concerned she was so 'sleepy' . Well, we stood there and turned this thing on, hitting the Tucan to make it turn on over and over every so often - and she stayed awake for the entire 45 minutes. She tried following the movements of the animals with her eye by tracking it and she was staring right at it. We were thrilled - still are. :)

So then 2 pm rolls around. I had just finished up pumping. It was time to meet. We go down the hall into a big conference room. There is Nic, myself, our hospital appointed 'social worker' (every family gets one), the neurologist and her 2 resident neuorlogists. (I think they were) I turn on the voice recorder on my phone and record the entire session. I also have paper and pen to write down notes. I am ready to hear what they have to say. They tell us that Cayleigh developed a stroke in the uterus sometime in the 2nd trimester - around 16-22 weeks. Nothing I did caused this they say. It isn't hereditary they say. The stroke then caused the NAMEOFTIGHTENEDMUSCLES in her which is probably why she got 'stuck' with her leg up by her head. (the right leg thats so stiff). They go on to talk about the smaller left side of the brain. The neurologist told us she re-reviewed the MRI with 2 neuroradiologists after our brief meet this morning (they'd stopped by briefly when Dr. Fernando was talking to us cribside). She explains to us that the left back side of Cayleighs head is severely damaged. That the left side has polymicrogyria. Basically normal big waves that a brain has are not there, instead there are a bunch of tiny little waves. She tells us that they also re looked at the right side of her brain. There is a large rige on the back side and a little bit of polymicrogyria in the front side. It isn't nearly as damaged as that back side of Cayleighs left ventrical hemisphere.

There was alot more explained and maybe Nic will want to explain it in more detail but I, I dont realy have the mental fortitude to go over it all. I will say that her Liver, Kidneys, Lungs and organs look perfectly normal. She has no fractures or anything on her Xrays. Her lungs are working and she is breathing on her own which Dr. Fernando is very encouraged by.

We still need to figure out the suck/swallowing. All of the secretions (which is spit built up because she isn't swallowing) is making it hard for her airway to stay open sometimes. They are having an ENT (an Ear Nose Throat doctor, who we met before going to the meeting for a few minutes and I laid hands on and prayed for) check her throat today. They want to see what can be done (or any anatomical abnormalities) they see to get her airway/throat clear. They don't think that the suck/swallow is related to an anatomical issue (they say its brain injury related) but I'm still optomistic. At the least, they can figure out if they need to do anything to her jaw (which is recessed due to the stroke) or tongue (like tie it down, which i'm not sure how that works) to get her airway clear. She still needs to swallow. That, Dr Fernando thinks, she may need the tracheotomy for. I still cringe but he explains it all to us. Its not an easy fix. It's not easy to care for, etc. She still may not need it. I will continue to pray she doesn't.

She will need a feeding tube also if she doesn't start swallowing. The doctor tells us that she does have some sucking, but not the swallowing. This Gtube would go through her stomach. They'd also, because of reflux, do a procedure at the same time to fix the little sac above the stomach that helps keep the food down.

The neurologist also said that the first test they did on Monday to check for seizure activity came back normal. But, she is going to have another test done that is simliar (we saw the hat on her when we were leaving. it looks the same) to do a more in depth test to make sure she isn't having seizures. She says those are treatable and that, if she were having them, the medicine could help her be more awake. I point out to her that Cayleigh was awake for 45 minutes watching her toy.

Nic and I ask a bunch of questions. She tells us that she can tell we have a strong faith and that its good to have hope. I tell them all that we pray for all of them and that the Lord is leading them in the direction they need to go to help Cayleigh. That while she may need to have certain things for temporary time we will continue to pray that she won't need those asistances for her entire life. That we will pray for her recovery. We will pray for her to talk. Pray for her to walk. Pray for her to swallow. We WILL pray and that I believe the Lord will heal her.

So this was alot to swallow in one day. I still haven't swallowed it. But I can tell you that I'm tired of telling people how it went. I'm tired of discussing it. I need time before I'm bombarded with questions. I need to process and pray. So, if you call or you e-mail or you text and I don't respond, I don't love you any less. I just need some time. So does Nic. Time and prayers.

Please pray for Cayleigh
Pray that the Lord touch her sweet little mind and begin to heal her.
We realize that she may not ever be 'normal' but what is normal? We just ask He touch her sweet mind and just begin to work His healing on it. We pray that she begin to swallow. We pray that the ENT finds something that causes the swallowing to start! :) We pray for her O2 and heart stats to be NORMAL. We pray that she will walk. That she will talk. That she won't need a tracheotomy. That she will be home sooner than later and that that Lord guides the doctors and nurses that care for her.

Please pray for us, for strength, sustaining, peace and, above all, faith.

Thank you all. Please enjoy the pictures of our beautiful Cayleigh Jean