Prayer request for the next 24 hours

Just want to ask all the prayer warriors out there to pray for Cayla these next 24 hours specifically with her being weaned off morphine so they can have her coherent enough to breathe and respond to see if she's ready to have her breathing tube removed and possibly the central and arterial IV's (jugular and wrist) removed.  I have to say that I'm glad I'm not there tonight as she starts coming to more and more and fighting and feeling the pain and silently crying.  I could not handle it, but I trust the nurses to do their best taking care of her.  She does not stay still at all and thrashes around when not drugged.  I would love to somehow through a miracle from God have her be able to be on a much lower dose of morphine but still sleep or be able to relax without all the thrashing around.  Her vitals are pretty much in the range they should be to be able to remove some of this stuff.  I know she won't remember any of this, but it doesn't mean she's still not going to be in pain these next couple of days, especially if she can't calm down.  I don't know.  Just asking for peace for my precious baby girl!  Thanks!

I will also add an answer to prayers today too.  The nurse practitioner did not want to use the central or arterial IV to leave them open in case they were needed in an emergency.  So she needed to add another IV line in her other arm.  She put the rubber tie around her arm to restrict blood flow and  then tried to find a vein to work with.  She felt and felt and felt around and finally tried a spot and missed and without pulling the needle out was digging around for the vein in her arm.  I started crying and had to go to the back of her room to not watch but just pray.  I know how that hurts when they go digging for a vein.  The poor nurse was sweating it out trying to find this.  She pulled the needle out, gently rubbed the arm down and searched again.  I'm still crying uncontrollably, hormones are still to blame here too, and I start to pray again, knowing that many have and are praying too.  The next words I hear her say a few minutes later when she tried again were, "It's a miracle!  I wasn't even sure that was the right spot, but got it the 1st try!  What a miracle!"  When I heard her say it was a miracle twice I started crying even more, but happy tears.  God guided her hand and allowed her to find it the 2nd time.  :o)  I just want to say thank you for all the prayers that help even in smaller things she's going through. 

Here's a picture of her now with IV's in both arms and some pictures of my inlaws coming to visit tonight!  :o)  So, so, so good to see them all...Mom, Joe and Cathie.  Plus the picture of the deer running down Euclid Avenue as we were waiting for the shuttle tonight.  Just a little out of his comfort zone.  It's a little blurry but he's in there. 

Her IV's in both arms and what Grampa Joe said when he saw her like this, "Rudolf the Red Toed Reindeer."  :o)

Cayla's Aunt Cathie

Grandma and Grandpa

The deer on Euclid Avenue...

1st surgery day

We're back in the RMH room and I am finally ready to write at 10:30.  Sorry it's late in coming with an update. 

She came out of surgery looking just like she went in which is a good thing.  I expected her to look worse, but she didn't.  Her nurse said that she also came out of surgery with exactly the same meds and calcium and all she went in with.  She said that is very rare.  They usually come back from surgery with more stuff, but she is doing so well that she didn't need anything more after than what she went in with.  That kind of tells me just how sedated she was these last days if the same meds are strong enough to support her after heart surgery.  That is sad to me to think about.  But, she has her surgery behind her and we are on the road to moving on and moving home.  :o) 

Dr. Stewart came down after he was done to talk to us about everything.  Let's see how I do in my tired, somewhat comatose state, in remembering it all...  He said plan A of just banding the pulmonary artery could not work.  Two reasons... First, the part he had to work with was only 6mm in length.  He possibly could have done it in that small space, except for reason two which is that her coronary artery is coming out at almost the exact same place as this pulmonary one.  So close that if he banded the pulmonary and it moved any, which they can do, it might touch or affect the coronary which would be deadly.  He didn't even want to try it.

So, plan B went into affect.  That pulmonary artery, the artery that takes blood to the lungs, branches off at the end of that 6mm.  One branch goes to the right lung and the other to the left lung.  Since he couldn't band it before it branched, he had to do bilateral banding, band each branch individually.  He said the hardest part of that is to make the banding equal to send the same amount of blood to each lung.  He said it took the longest part of the surgery trying to go back and forth and run tests each time to test the blood flow and get them as even as possible.  Difficult to find the exact spot, he said, but even more time consuming.  He said he felt he got a good feel for where and how tight they were placed.  He said she should be more blue in color now instead of her nice, healthy looking pink she has now.  That means the surgery was successful.

He also said she had little to no thymus gland.  Bottom line on what that means... weakened immune system.  It is really used by the body only in the womb.  But he said if he were a betting man, he is sure she has DiGeorge syndrome which has a broad spectrum from very mild, not knowing you have it, to very severe, life-threatening.  It can cause all sorts of problems across the spectrum.  It is also very common to have a calcium deficiency with this.  Cayla has been on calcium supplements for over a week now and it's being depleted as fast as they can give her more.  This is also what could be causing many of her other problems and deformities like the club foot, the curved spine, the fused ribs, the shortened ribs, the anus, and whatever else I've forgotten or they haven't discovered yet.  So, now we can add a weakened immune system to her list.  It's not like she'll have to be in a bubble, but we will have to watch her and they will tell us more about all this with the genetic doctor after the tests come back in a week.  So, more to be said about this later.

He said he will probably do her second heart surgery, the Glenn, when she's 4 and a half months old to give a six week healing time before they do her surgery on the anus at 6 months old.

So, it's late, her surgery went well, we were able to tell most of the team that went into surgery that there were a lot of people praying for them.  :o)  They all said a huge thank you!  I also found out that since this morning was the Ashtabula County Concerts of Prayer Breakfast at Spire Institute, that the 500 or so Christians there this morning prayed for her!  That is just so awesome.  So many prayers were offered to the throne of God today for our baby girl all over the world that I have to say, God was definitely working!  She went in and came out looking and doing so well.  They are pretty sure they can remove her breathing tube tomorrow!  YAY!!!!  That was Cayla talking. ;o)  They might even be able to remove her central and local IV lines.  The one is crammed on her jugular on her neck.  If you haven't already,  take a look back at some of the pictures of her... She has no neck.  :o)  But they were able by using an ultrasound to anchor and sew down the line into her jugular... talented people. 

Anyways, she is resting well tonight and still pretty sedated although she opened her eyes for a good while tonight and let us look at those beautiful eyes God gave her!  She really is so precious.  I'll close for now even though there's so much more I want to say, but don't have the energy to do so.  I'll try to add some pictures before I go.  But please know that God has heard and answered so many prayers today.  We will pray and keep updating on her progress of recovery.  Love to all who've prayed and encouraged us!

The 15 doctors discussing Cayla yesterday when I arrived.

Cayla Joy her first morning back in the PICU, Thursday.

Doctor Stewart drawing Cayla's heart and explaining the surgery to us yesterday, Thursday.

Grandma brought Lowell and Samuel up Thursday afternoon and got a little Cayla time and loving.

Dr. Stewart preparing me to sign my little Cayla over to him for surgery Friday.

Big brother Samuel and his little sister.  :o)

Samuel and Cayla's hands.  :o)  Makes me want to cry.

Grandma Pat and Grandpa with Cayla before surgery this morning.

Our little family before surgery this morning.

The surgical team taking her away to the OR.

The OR parade en route.

Waiting in the RMH family room for surgery results.

Cayla, right after surgery this morning!  :o)  Our little trooper!

Had a great visit with Pastor and Mrs. Emery!!!  :o)

Lowell saying goodnight to Cayla after a long and rough day!  Good night to all!

Cayla, feisty little thing...

Our dear, sweet, little, innocent, unassuming, precious Cayla Joy is getting a reputation in both the NICU and PICU...  She's repeatedly being called a "feisty little thing".  :o)  She absolutely detests the tubes, wires and anything within reach of her sweet little hands.  She will grab, yank, pull, push, throw, or squeeze anything she possibly can much to the chagrin of nurses and doctors.  Now that she's in the PICU, they have these "cute" little soft cuffs they put around each wrist with ties attached that are clipped down.  My child is in handcuffs and she's 9 days old.  What does this say for our future? ;o)  I say she gets it from Lowell for sure, even though I'm going to be the one having to deal with this "feisty little thing" during each day.  :o}  I can't tell you how much I'm looking forward to that... No, it's all good.  I think her feistiness will serve her well through multiple surgeries she'll have throughout life.  Not only is she being "handcuffed", she is also having to be heavily sedated.  It's so sad to me to see her lying there so out of it.  I am glad she's not fighting and able to rest since that is what's really needed at the moment.

As I walked in this morning, there were 15 doctors standing outside of her room, discussing her.  I took a picture of them, but can't post it until I get back to my room tonight.  I'll just add some pictures in here later, so you can check back.  The bottom line... she had what they keep calling an "episode" early this morning.  Her heart beat went up to the 220's because she got so agitated, and they could not settle her down fast enough before she blew all her numbers off the chart.  She pretty much blew all chances of surgery for today.  So Friday morning it is for surgery.  She will go back for prep at 8am and surgery will start promptly at 8:30am.  When I went in her room, her heart beat was hovering in the 190's and stayed there for most of the morning.  They decided to take her off all diuretics and allow the fluids to help bring the number down.  It worked.  Within 30 minutes she was down to the 150's.  Yay!  :o)

Dr. Stewart came in to talk.  He got paper and drew pictures of all three heart surgeries she will have in the next 2 years.  This one tomorrow is not as serious as it could be.  He did say that the pulmonary artery that needs banding is only 6mm long which doesn't give him much room to work with.  He told us what plan B and plan C are in case he can't band it.  I'm not going into it all right now, but hopefully plan A will work.  He answered questions and read me my last rights :o) and had me sign Cayla's life over to him which I was happy to do.  Dad and Pat were there and got to meet him and were so impressed with him.  You can't help but be impressed with him.  I told him there were many, many people praying for him and the whole team tomorrow.  He got a big smile and said thank you to all who will pray for him.  :o)  He did say that even though there will be students, residents, fellows and all looking in, he will be the only one to operate on Cayla other than closing her up.  I have to say I'm glad. So, here we go.  :o)  God is in control.  Oh, he also said her lungs were almost completely clear and the mucus had pretty much diminished to nothing!  So all the paths to surgery seem clear and ready to go in the morning Lord willing!

The anesthesiologist came in and explained all he will have to do tomorrow to keep every part of her sedated separately so they can adjust as needed to different areas of her body.  I almost think he's just as important as Dr. Stewart in all this.  We have a lot of confidence in everyone we've met.  Love that.

Lowell, Samuel and my mother-in-law came up this afternoon.  Lowell took off at noon from work just in case she had surgery today.  I couldn't help it, but seeing him triggered something in me and I just started crying as he held me.  Haven't seen him since Sunday and let me tell you that was a long, long time ago.  They got to hold Cayla's hand and feel her squeeze their fingers even through her sedation.  It was pretty emotional for all of us.  Lowell started talking to her and she turned her face toward him and his voice.  So sweet!  She does look completely different than she did last week.  Her eyes are somewhat sunk in and have dark circles under them.  Her hair is still all plastered down from the EEG and they can't bathe her since it would cause too much trauma to her system. Oh well, that day will come.  :o)  We all love this precious little girl so much.  We thank you for your prayers tomorrow and over the next couple of weeks! 

I need to go now, but will try to update as I can.  I was able to get a half hour power nap in her room this morning which was really nice!  Off to see our precious Cayla Joy!  :o)

Surgery possibly Thursday now

Well, here I sit at 11:30pm trying to focus and stay awake another half hour to pump.  So, let's see what I write tonight...

Dr. Stewart came by at 3pm today to say that if he finishes his other surgeries tomorrow early enough, he wants to take Cayla in tomorrow afternoon to do her surgery.  He was getting concerned with the blood flow to her lungs which supersedes the fluid in the lungs and the mucus in the throat.  He said he was having her moved immediately up to the PICU to be prepped for surgery and be ready in case he can do it.  Here's some pictures of her now in the PICU.

No guarantee it will be tomorrow, still could happen Friday morning.  Would love for it to be tomorrow.  The PICU put her on a morphine drip to keep her agitation down.  Didn't work and they had to give her something a little stronger to knock her out and then let the morphine maintain it.  So hard to walk in tonight and see her so lifeless.  If you notice in the above picture, they have restraints on her hands.  She really needs them but it just looks wrong, like she's a prisoner or something.  She's been on morphine all week, but she fights against and still pulls at anything and everything she can get her little hands on. So, seeing her finally not doing that or doing anything is good but sad.  Oh, can 't wait for surgery and we can move on.  This waiting is for the birds.  :o{   Anyways, I'm tired and not focusing well.

The doctors in the NICU this morning spent quite a bit of time trying to figure out how to balance out Cayla's meds.  Cardiology wants to see more output (urine) from her so they want to increase her liquids.  Neonatology wants to get the extra liquid out of her lungs, so they put her on a diuretic to remove fluids.  These two "wants" are slightly conflicting...  They also want her to increase her calcium.  One of the other things she's taking, depletes calcium...  They had a bunch of things like this to work out.  They apparently did and feel like they are making the best decisions for Cayla. 

Kim and Dave Hunsicker came by to visit today too!  Had fun laughing with Kim over stories we had to tell... :o)



Dad and Pat arrived tonight and we got to go back over to see Cayla. 

Pat took all these photos on her Galaxy tablet.  Here's one more she got of me and our precious Cayla Joy.

Extremely tired, but hopeful she can have her surgery tomorrow.  Thanks for the prayers.  I mean it, really.  Thanks to all who've prayed!   Until tomorrow!  :o)



Surgery is postponed until Friday

"In the day when I cried thou answeredst me,
and strengthenedst me with strength in my soul."

Psalm 138:3

This verse describes Monday and Tuesday.  Cayla is struggling with the breathing tube... not breathing, but the tube.  Who wouldn't?  I went to look at her yesterday and realized that she was crying but no sound was coming out.  The look she had with that silent cry was heart-rendering.  I lost it.  I tried to console her all throughout the day whenever someone had to poke, prod or do anything to her.  Whenever they did something, inevitably the tube would be jarred and she would cry, but the tube is blocking her vocal chords so she has no voice, no sound at all.  It is truly one of the most pathetic and sad things to see.  The look in her eyes says, "Mommy, do something to stop this..."  At least that's how I interpret it. Every time she cried, I found myself crying.  It was a little rough going there for a while.  My mother-in-law and Tina Siesel came up to see us yesterday which was so nice, but I got all caught up in comforting Cayla that I felt like I wasn't very good company. 

She would respond to my voice and my touch and for the most part calm down and stop crying.  I let her hold my finger and squeeze it and my other hand was lightly rubbing her head as I talked to her.  It was nice to be able to do that, but all could focus on was her look and cry.  God has changed all that today. 

I started today by taking my first step in the hospital and bursting into tears.  I was fine outside, but I cried all the way to the NICU.  I sat out in the lobby to try to settle myself down, but gave up and just went in her room crying.  Well, the sight I was greeted with was this.

They were just running an EEG on her, but since I was already crying, I thought I better just go get my breakfast and come back in a little while.  So I did.  I took it out to the waiting room and called my sister-in-law Marla.  She answered the phone and I couldn't speak.  I finally got something out so she knew I was on the phone, but then burst into tears again.  It's a lot of hormones and being tired I know, but it pretty much took a whole long conversation with her to settle me down and stop crying.  Plus, it helped to get some food into me (2 gluten free English muffins but could only eat one, 2 hard boiled eggs and a fruit cup!  I don't eat this good or much on my own...very nice.). Anyways, Marla encouraged me in the Lord and when I was off the phone, I prayed and asked God for peace.  Peace to settle my soul and be able to get through a day.  Nothing wrong with tears.  They're very necessary and healing, but I was kind of out of control.  Well, let's just say I was able to walk back in the room which was now filled with 8 doctors, nurse practitioners, fellows, nurses and so on who were just starting a run down on Cayla and what her plan for the day was (another picture, didn't even get them all in the picture)...

 

I was able to laugh, tease, smile and radiate peace in that meeting.  So much so, that Dr. Vladimir (in the green shirt), the head Dr in the NICU even made a comment about how different I seemed today.  I said to him and everyone else that God was answering a lot of people's prayers and that I was full of God's peace.  He smiled and said, "I can tell."  When the EEG was done, they were trying to remove all the tape and stuff off Cayla's head, but she was grabbing everything and crying her little, silent head off. I walked around to the other side of her bed and tucked her one hand under the pillow and held on to her other one while putting my other hand across her chest gently.  I just talked to her and ran my finger around her cheeks and was able to NOT cry and get her completely settled down while they scrubbed her head to get all that stuff off.  It was hard to watch, but it was just God that allowed me to focus on Cayla.  Overall I think it was harder to see her with that breathing tube than all these wires because I knew these wires were temporary and would be off soon. 

But that is how the rest of my day went.  I stayed by her bed watching her and loving on her through the arm holes in the side or when the nurse opened the top up too.  It just made for a long day, but I guess I got all my crying out of my system, since I didn't cry again today.  God strengthened me with strength in my soul!  What a great verse!   :o)

At noon, Dr. Stewart, the cardiac surgeon, came down to see me and told me that he has two concerns with Cayla having surgery tomorrow.   First, there is some fluid in her lungs which will need to be removed before surgery.  Second, there's thick, yellow mucus being suctioned up from her breathing tube and from her mouth.  It's not an infection, but will cause her problems breathing after surgery and is a great breeding ground for bacteria after surgery to get an infection then.  Until those are cleared up, he's postponing surgery until Friday.  He also told the other doctors that there is to be no more blood drawn for testing.  He wants her to have as much blood in her body as possible during surgery.  Makes sense to me.  It was interesting the reaction of other doctors to Dr. Stewart.  He is actually a very quiet and meek man, not wanting to be in the limelight.  But, he is very highly respected and apparently has the final word on what happens.  They all just stopped and listened to every word, no arguments, just a bunch of yes sirs and utter respect.  I heard another patient say that Dr. Stewart will stay at the hospital and won't go home for hours and hours if one of his patients is not stable. Can't beat compassion like that in a doctor, I think. 

Well, that means that I don't get to see Lowell and Samuel tonight or Dad and Pat.  Dad and Pat are coming from Canada tomorrow and will be here with me a day and a half before surgery which is nice.  Don't get to see my boys until Thursday night with Grandma.

The lactation nurse came and sat with me today asking how I was.  She said I looked great and seemed to be handling it all well.  So, I gave all the credit and glory to God and told her all about the amazing prayer support we have.  She's been on me, constantly checking on my milk supply and all, but after this conversation,  in which her only response was, "Sounds like you have a good faith." (it's not about my great faith, it's about my great God), I think maybe talking about God made her uncomfortable.  I don't know.  Wonderful people though.  I just want everyone to know that God is my strength and upholding all of us through this.

Oh yes, I got a massage today too.  The lady came through and my nurse instantly said that she had a mom who needed a massage.  So, I got a 5-10 minute massage.  It felt wonderful.  Nice touch.

Cayla also had another echo cardiogram today.  I suppose we'll get the low-down from the cardiac doctors tomorrow. 

Quick little story about the little fighter I've got on my hands.  I was sitting with her when I realized she'd worked her one hand free and grabbed the breathing tube.  She was pulling on it with all her might to get it out.  It's taped on pretty good, but she was really moving it and hurting herself and crying all within 2 seconds before I realized what was going on.  I took my one hand and went to remove her fingers, but they wouldn't budge.  I had to bring my other hand over to hold the tube steady and then try to pry her little fingers off the tube.  She had a death grip on that thing and it took me a good 20 seconds to pry her fingers off that tube.  She's a newborn...how hard could it be?  Apparently hard when you have a determined little girl wanting that tube out....

Here's another little blessing from RMH.  I had forgot to turn in my meal sheet yesterday at the hospital, so I just get whatever they decide to send me.  For dinner yesterday I ended up with a small grilled chicken breast and a little pile of mashed potatoes with a cup of coffee.  It said on the sheet that I was supposed to get mixed veggies and a salad too.  I didn't complain or anything but was really wanting the veggies.  But last night when I came back to the RMH, I stopped in the community kitchen to see if there was anything gluten free to eat.  Guess what was there... A huge veggie tray and a container with cooked broccoli, cauliflower and carrots.  So, I loaded up on a ton of veggies and God provided just what I needed when I needed it!  :o)  Tonight, they had a huge bucket of grapes and strawberries.  :o)  Love how God does things like that! 

Once again, I know there was more to say about today, but it's now Wednesday morning and I need to get going for the day.  So, I ask you to pray for Cayla's lungs to clear, her tube to clear, and comfort for her these next 2 days waiting for surgery.  Pray too for Dad and Pat as they drive down from Cananda this morning.  Thank you for all the prayers and support!  Love to all of you! 

A few more pictures from days 3-5

Lowell and I this beautiful Sunday morning sitting out in front of the Ronald McDonald House waiting for the shuttle to take us to the main entrance.  It was such a nice morning with the sun shining.  I could have sat there in the sun all day.  Just made me thankful for God's beauty all around us.

This is our room at RMH.  So blessed!  They said they'd bring in cots if we needed more beds.  Later on I'll have to write about this place.  Quite amazing really.  Makes me not feel so guilty eating at McDonalds to support them. ;o)   (It's their fries that I just can't resist...)

 This was our last few minutes in the Pediatric Intensive Care Unit (PICU..."pick you") before being taken to 3rd floor's Neonatal Intensive Care Unit (NICU..."nick you") for her step down room since her heart was so stable.

Just arrived in the NICU, getting ready for the doctor and nurse practitioner to check her in by running all her vitals and measurements and tests for their records.  She had the feeding tube put in her nose that morning since she was struggling with sucking and swallowing.  The heart doctors need to have her eating a set amount of milk and regulate it for surgery.  I was able to bottle feed her twice with what I had just pumped to help her learn.  :o)  She could only get a little in her mouth and then I had to pull the bottle out to let her swallow before going on.  She couldn't figure out how to suck and swallow simultaneously.  Since her episode last night, she is not feeding and is back on an IV I think until surgery.  Things keep changing in here, so you never know.  

Thursday after lunch when I came back to the NICU to see her settled in, she wasn't looking so good.  She was jaundice and her birthmark across her eye lids and nose was showing up really dark.  This wasn't her best moment, but I took one of her anyways. 

Dr. Rajabi.  He stopped by Thursday afternoon to check up on us and see how we were doing.  Very, very nice of him.  He was so happy that Cayla had been doing so well when most babies in this situation aren't.  He even agreed with me when I gave God the glory and credit for this miracle of no Norwood surgery.  He couldn't deny it and didn't even try.  He and all the staff at Hillcrest have just been so above and beyond in their care that it just makes you feel special.  God has given us great doctors through this whole process.  For those who asked me to tell him thanks for taking such good care of me, I did tell him and he smiled and said that he just had a good patient who did everything he said to do.  Apparently not all do.  :o)  

Friday night, my in-laws came and brought Lowell up for the weekend.  They weren't coming until Saturday, but surprised me by coming in on Friday night!  :o)  Grandma and Cayla have some kind of connection going on because every time she holds her, she's awake and focused on her and they're sharing secrets with each other or something... :o)  So precious!  I guess by the time she gets to Daddy, she falls asleep on him.  :o)  We are all so amazed she's ours and so beautiful and so, so precious.  Daddy's heart has been stolen big time by little miss Cayla Joy.  :o)  

These last 3 pictures were taken today after she'd been put in the incubator.  She now has a breathing tube down her tiny little throat and an IV back in her umbilical cord.  She was on a lot of medication today and hardly woke up which is good, since I'd hate for her to be awake and so uncomfortable with that big old tube.  She's been stable all day today.  They do not have the breathing tube in because she's having trouble breathing, but to lessen the work her body has do right now, so she can put more energy into her heart to pump blood.  Don't know if this will stay in until Wed. morning's surgery or not.  I guess we'll find out tomorrow.  

Well, there's some of the latest updates.  It's 11pm.  Time to pump and go to bed.  :o)  Thanks again for all the prayers for us and our precious Cayla Joy.  God is faithful!  

Rough night for Cayla

Well, we slept well and no one came in last night to check my vitals.  Very nice indeed.  We did wake up about 4am, and I decided to go pump since I was awake.  Got the largest amount yet!  After 20 minutes I headed back to our room and Lowell was sitting up waiting for me.  He said my phone rang, and we got a call from Cayla's doctor while I was out.  She was losing her color and crying so they started checking her over again.  They couldn't get her vitals back where they should be, so they had to sedate her to insert a breathing tube and she is now on oxygen.  They needed to put an IV back in her, so they were able to still use the belly button to do that and she is now intubated which I guess just means she's got that breathing tube down her throat.  Lowell looked at me to see how I was reacting and asked me if I was ok and you know, I was.  Despite the emotions of yesterday, I am feeling much more at peace now.  I guess the Lord knew I needed to get it all out of my system yesterday before starting to hear news where Cayla is taking some steps back.  Lowell held me and prayed and we were both able to go back to sleep for another hour and a half when the phone rang again. 

The doctor was calling to update that she was still stable and reexplained everything to Lowell.  The cardiac doctors will be coming in to assess her situation early this morning and hopefully give us some report.  They want to figure out if something is going on that might warrant moving her surgery up or who knows.  We'll see what they say this morning.  So, we're getting ready to go back to the NICU and start our day.  Such a different feeling in my heart this morning than I had yesterday.  God is in control.  Period.  That's the bottom line and I am truly good with that.  Focus on God is my goal for today and the next few days, weeks, months and years.  I guess with a goal like that, it should never end.  :o)  God has promised to be faithful, He cannot break that or He wouldn't be God.  So, I go into my day ready for whatever happens, knowing we will not be moved because God is right here with us.

Missing my church family this morning.  My first Sunday at the hospital, and I'm sure not my last.  Thanks for your prayers!  Gotta go see my precious Cayla Joy! :o)

Check out day for me

I almost don't feel up to writing right now being so tired, but I think it will help me finish out this crazy day.  I just need to remember I'm still hormonal, greatly sleep deprived, sore, and not always quite sure how to deal with everything going on around me.   I know I could never have made it through today without Lowell here.  God's Word reached through my thick head many times today, sustaining me when I felt overwhelmed.  These 2 verses were on my mind too, I just wish I could truly say the "always" part of verse 8.  I would've had a better day if I was truly able to say this first phrase...

"I have set the Lord always before me: 
because he is at my right hand, I shall not be moved.

Therefore my heart is glad, and my glory rejoiceth: 
my flesh also shall rest in hope."

Psalm 16:8-9

Tonight, my heart is glad (pretty tired, but glad), not because of circumstances, but because of Jesus Christ being at my side.  My flesh is resting in hope that can only come from Him.  I am exhausted physically, emotionally, mentally, and more I'm sure.  I haven't really gone into detail about the delivery on Tuesday, but Dr. Rajabi stopped by Thursday to check on me at the hospital and told me my incision should be pretty sore for a little longer.  Partly because he had to deal with adhesions.  The scar tissue from my previous c-section 16+ years ago had fused with parts of my intestines and had to be cut apart and cleaned up.  He said that there was a lot of cutting and scraping going on during surgery which will compound my healing in the new incision.  I am feeling good, but still in pain today when standing after sitting for any length of time.  I did get checked out of the hospital as a patient today which made me a little nervous since I don't physically feel ready to take on the world yet.  I will be at the hospital for at least another 2 weeks, maybe more.  So, that makes me feel a little better being around very helpful and sympathetic nurses and doctors who are more than willing to keep an eye on me as well as Cayla.  Just tonight, Lowell worried about me when I was gone longer than usual to pump and asked Cayla's nurse to go check on me.  I had fallen asleep pumping again and had just got up to clean up and go back to the room when I knocked over the bottle of milk I had just pumped.  They say don't cry over spilt milk, but that doesn't apply to a nursing mom who's fighting for every drop.  I was standing there when the door opened, saw Jennifer the nurse and burst into tears (for about the 6th time today).  She just took right over, dealt with the mess, and then looked at me and started to talk to me about my day and what all was going on.  She listened as I cried, talked with me about it all and then told me what I was going to do.  She was now my nurse and not just Cayla's.  :o)  She told me to go back and hold Cayla for a few minutes and then Lowell was to pack me up and take me downstairs in a wheelchair to the mall and get some fresh fruit or a simple snack.  Then take me back to our room at Ronald McDonald House (RMH) and put my feet up and put me to bed to read, relax, sleep or just rest since it was only 7pm.  Lowell didn't hesitate one bit since this was already pretty much his plan, but was glad to have the nurse tell me so I couldn't argue.  I didn't argue, and off we went. 

Today was the last day we could be at the hospital, but still didn't know where we were going to be tonight.  We somehow didn't get on the waiting list for RMH and I was being discharged.  I can't stay in the NICU and thought we were going to have to sleep in the RMH family room that's in the hospital and sleep in recliners.  The social worker from yesterday realized our dilemma and made the call to RMH herself and come to find out that the lactation nurse was really concerned last night about us and made a call herself to RMH saying that she had a new mom who really needed a room and didn't want her sleeping on a recliner, and asked if there was possibly any way we could get bumped up the list.  Not sure how long the list was.  It might not have been that long anyways.  But apparently between these 2 people pleading on our behalf, we got a phone call before lunch saying we had a room for as long as we need it at the RMH!  I don't think I cried then, but could have.  I know I definitely felt like it if I didn't.  We had no idea they went to bat for us. 

We were able to hear the doctors' reports as they came through this morning.  Cayla's doing well, but now they have found another problem, this time with her little bottom.  Not wanting to go into it all on the blog, it appears she will need another surgery around 6 months old to correct this problem.  We have not heard an official word on the surgery part.  If this is true, it would have to be worked around her more important heart surgery.  I hear news like this and initially want to cry and did.  The feeling that everytime we turn around this week, we're hearing of more problems she has that will require surgery in the future outside of her heart surgeries.  This kind of hit me at a moment when I felt that if they find one more thing to have to operate on her little body, I'm going to lose it.  A few tears came out, but then those verses came to mind.  I was instantly reminded that none of these really are life-threatening surgeries and the one big life-threatening surgery has been eliminated.  God is working in her life.  God is working in our lives.  I just needed to change my focus there a little bit and realize that the Lord is at my right hand and we will not be moved.  Ours and Cayla's strength will come from the Lord.  We can love her through all this and still have a heart that is glad.  I love that, because after all my tears today, I need a glad heart and so will little miss Cayla.

I need to go to bed, but I just wanted to talk about checking in at RMH.  We are blessed to be sitting here tonight.  God is good.  So... if any of you read my blog from a while ago about a call from Nurse Mary Lou, you might remember my reaction to hearing that we qualified to stay at the RMH.  I was pretty much overwhelmed at that initial phone call to think that we were going to be one of those families with a sick child that was able to stay at the RMH.  I didn't want to picture me and my family in that way.  So, here we are, facing that moment when the RMH is our destination for the 1st time.  Lowell and I had all our stuff and were on the shuttle bus.  As it pulled up, I started crying before I even stepped off.  I couldn't stop.  We walked inside, Lowell started checking in and I could hold it back no longer and burst into tears in front of everyone.  I couldn't stop either.  I wasn't really thinking about it consciously, but somewhere inside me realized this had come true and we were here and I had no control over the tears.  Lowell just held me and time stood still.  When I had a some kind of control, he was able to finish, but I was sitting there the whole time unable to speak as tears just rolled out my eyes.  I was a little overwhelmed to put it lightly.  My eyes were unable to focus and the room was kind of moving when I realized that I am physically exhausted and just needed to sleep.  We quietly went through the tour, were showed our room with all the instructions, and as soon as Lowell closed the door, I started crying out loud again.... crazy feeling to be so helplessly out of control of your emotions.  It's also the stupid hormones working against me too.  I just got my pumping stuff and went down to the little room and pumped and sat and thought of my precious Cayla Joy.  Calmed me right down.  Lowell had walked to Rite Aid to get my prescriptions for pain.  I came back, made up the bed, and had just laid down when Lowell got back and  we both crashed for an hour and a half before my alarm went off and we needed to go to the NICU to get my dinner they ordered and see Cayla.  I am so grateful for all that RMH is doing for us.  This is an amazing place.  I am so thankful to have a bed to sleep in tonight and that God worked out all the details for us and here we are.  And I can rest well because I know Cayla is in great hands tonight over in the NICU.   Oh, I did take some pics of our room here, but haven't had time to download.  Maybe in another post I'll add a bunch more pictures of  our time these last few days. 

Now it's off to bed, and I am really looking forward to no one coming in to check my vital signs in the night, or wake me up for blood work, etc.  Thank you Lord for all you've done for us today.  :o) 

Quick note on her upcoming surgery

I don't think I said anything about what this surgery is, just said what it's not.  It is not the huge 1st HPLHS surgery called the Norwood where they have to reconstruct the right side of the heart to do the functions of the left side too.  Cayla has been 100% miraculously blessed by God to have her aorta already created on her right side of her heart instead of the left.  I believe I've heard a couple of doctors say it's kind of rare.  I think I said earlier that she will have to have surgery on the aorta to split it from the coronary artery, but that's all part of surgery #2 coming up when she's 3-6 months old.

Her surgery next Wednesday, May 2nd, will be considered much more of a minor surgery.  When she was born, they were expecting her to be pale with a blueish tint since her red and blue blood, oxygenated and unoxygenated, are mixed.  But, she came out looking all nice and pink and healthy, which I guess was a clue that too much blood was flowing through her pulmonary artery.  This surgery is only to go to that artery and tighten it up by banding it.  We're talking about an artery that's probably a couple millimeters or so in size, I don't know, but very small that will have a band that can't be bigger than a thin piece of thread wrapped around to decrease the blood flow.  How you would band something that small and control the flow through it?  I can't imagine.  Dr. Stewart said it's fairly routine for him.   Good to know.  Don't envy him though.  So, there's not even anything going to happen inside her heart, just outside with no invasive surgery this time... minor surgery.  She is one blessed little girl!  God has been very gracious to us and to Cayla.  We thank Him and praise Him for this!

Some of Cayla's recent diagnoses

Well, there's so much to write.  What to say first.  I don't feel like going through delivery day ordeals, so how about an update on Cayla's latest diagnosis.  I think I'm up to talking about all of it...  the good, the bad, and the ugly.  I guess we'll see.

First of all, Cayla was moved out of the PICU today!  :o)  They were going to put her in the step-down unit until her surgery, but decided to put her in the NICU so she could get more help with sucking and eating.  She did have a hard time getting the whole sucking from a bottle down, so they put a feeding tube in her nose this morning. I will not be able to nurse her until after her surgery since the heart doctors are wanting her to eat exact, controlled amounts.  But they will still work diligently with me to pump so my milk will come in and she will still be getting my milk.  But overall, she's doing so, so well physically, you would wonder why she's anywhere near any ICU's (that's what one of the heart docs said). 

Her heart.  It is definitely a hypo plastic left heart syndrome (HPLHS) heart.  Her left side is non functional.  BUT it is true that her aorta, which is a major part of the left heart, is really on the right side and completely functional.  Huge answer to all the prayers!  So amazing and very uncommon, but God chose to do this and has eliminated the necessity of having the 1st and worst of the 3 needed surgeries!  Praise the Lord!  Now, what they did say that we hadn't heard before was that the aorta and coronary artery start off at conception as one.  After 4 weeks in the womb, they separate.  Cayla's did not separate.  They are still fused together as one.  They will need to be separated.  This will happen during surgery #2.  Her aorta also has 4 valves at the base instead of 3 which is common apparently with HPLHS.  Her pulmonary artery is also connected to the large combined pair which will make splitting them more difficult.  The valve between her 2 right chambers does leak and will also need to be fixed at some point.  Something was also mentioned that (don't ask me to remember the name) somewhere in her heart she has the wrong number of arteries.  I don't think Lowell was told what all that means, but just that there are many little and big things that will need to be corrected on her heart. 

Her club foot and other abnormalities.  When we arrived at the NICU, the nurse practitioner was giving Cayla an overall exam.  She got to her club foot and said, "I don't think this is really a club foot.  If it is, it's very mild."  She said she could turn her foot and with very little pressure get it in it's normal lined up position.  She felt it's more of just a positional deformity and not due to a muscular or bone abnormality which is much easier to correct.  We'll see, she might just need a brace to fix it.  Some other problems they have found, possibly due to the same unknown reason for the club foot, are that she has a slightly curved spine and will probably have to deal with scoliosis at some point in her young life.  She also has some ribs that are fused together and some short ribs, but they don't think this will be an issue for her, could be, but don't know or just didn't say.  At one point I heard the nurses giving a run down on her and heard them say something about her neck bones I think.  I will ask about that tomorrow.   I think there were some other things, but right now at 10:40pm I can't think of what else was said.  The things she has to deal with are not necessarily life-threatening outside of the future unknowns of her heart.  That makes all this not seem quite so bad.  I know there's other stuff, but I just can't think at the moment.  :o}

I think this is all I can write for now.  I've just had my vitals taken for the night and was told that no one will need to come in during the night.  I might actually get a good 6-7 hours of sleep tonight!  :o)

I do want to close with a grateful, thankful, blessed heart.  I just want everyone who has prayed for us to know that those prayers have just allowed us to be carried through so much!  So many prayers have already been hugely answered and she's only 2 days old!!  I'm going to start crying again...(I heard Lowell's voice on the phone tonight and started crying earlier...).  I know a simple written Thank You isn't sufficient, but God knows all our hearts and from the bottom of my heart I give you all a Thank You for so many prayers.  Even those that I've never met!  You've all blessed our family tremendously!  God is in control and we are resting in that!