Feistiness seems to be a good quality in a hospital...

It's late Monday night as I sit here very tired after just getting to the RMH.  I just saw myself in the mirror and my eyes are really red.  Not  completely sure why since the last time I cried today was around 2pm...... when they let me hold Cayla again for the first time.  :o)  I can't really describe what it felt like having her back in my arms again.  It just feels so right.  I could have held her all day, but I was falling asleep with her on my lap and really needing to pump.  So they made me put her back, the big meanies...  ;o}  Just remember I'm tired...

 

The 1st time I got to hold her since being in the incubator and PICU this time round.

Later Monday evening I got to hold her again.  :o)

Last night, Sunday, since I was alone, I decided I didn't feel like going back to the RMH, so I stayed and slept in the room with Cayla.  Her morphine was being decreased all day Sunday and her agitation level was increasing somewhat, although not as much as I thought it would.  The new nurse on the night shift wrapped her up in a cocoon and she seemed content.  But later that evening she would not settle down for anything.  So the nurse finally said she'd check her diaper.  When she unwrapped her there was blood all over her right side of her body.  The little stinker had worked her arterial IV completely out of her wrist.  It had been sewed and stitched down, but that didn't stop little Miss Cayla... What a mess.  I got to hold her up in the air while the nurse pulled the blankets and such out from under her, but I still got to hold her.  :o)

The nurse also noticed that her central IV in her jugular was bleeding and oozing too.  The doctor came in and he tried to clean it up and flush it and see if it could be used.  He couldn't get it to do anything.  It had been jarred enough that it was no longer in the artery.  He left not sure what to do with it since she'd just lost her other important IV.  Well, the nurse got tired of messing with the leaking and bloody thing and just pulled the IV out.  Let's just say when the doctor came in later, he was not happy, but unfortunately I slept through all of this drama while right there in her room.  I'm just a little tired.  It all turned out to be a blessing in disguise.  It has sped up the recovery process.  Without her central IV, they can't give her TPN.  Please don't quote me on any of this, I'm not sure I remember everything they said.  TPN is the nutrition IV that's I guess like liquid food.  So they spent yesterday trying to wean her off some other high something liquid IV so they can then start trying to feed her breast milk directly through her feeding tube in her nose to see if her tummy can handle it and not throw it up or anything.  If she can take it, then they'll move on to feeding her either by nursing or bottles.  If the lactation nurses have anything to say about it...  I just need to find them on the NICU and make sure they know where we're at with all this so they can go to bat for me.  :o)  No, I'm not conniving...  But this is really great progress and has been fast forwarded because of the whole mess with little miss innocent Cayla pulling out her IV's...  So, yes, feistiness is paying off in the hospital.  :o)

Well, it's now Tuesday night and I'm trying to write in the blog again.  Monday, Dr. Stewart the surgeon was stopping by to check her vitals really quick, and found out about the IV's and said that's great!  She's progressing well!  So, since she still had the other IV in her other arm, no one was worried.  My mother-in-law came up to visit on Monday which was so nice to see her.  I am truly blessed with my inlaws.  Cayla was sleeping most of the day and fussing a little.  The doctors wanted her blood gas taken but needed to draw the blood from an artery.  So two nurses were digging around her foot for an artery to draw blood from... very hard to watch, but I just kept comforting Cayla and tried to ignore them.  Finally got some blood, came back saying it clotted and couldn't use it.  Dug around again somewhat got some... came back again saying it wasn't enough.  At this point, they had already put her in my lap to hold her.  The nurse just said to hold her still and in 2 seconds got the blood she needed that she and the other nurse couldn't get in 20 tries.  So we were all glad that was over.  She was doing well and they were talking about trying the milk through the tube on Tuesday and going from there.  I got to hold her again last night and all seemed well.  I forced myself to pack up and try to get some sleep at the RMH.  I got here pretty late, and was too tired to finish the blog. 

This morning I got up at 5am and started my day.  Didn't get out the door until 7:45.  I was on the shuttle to the main hospital when her nurse called me.  He wanted me to know that Cayla had a rough night and she managed to dislodge and pull out another IV, the last one in her other arm.  They have to have an IV in her at all times.  Preferably one in an artery.  Apparently the nurses tried to get a good line in many places on Cayla, but couldn't get it to work (so glad I wasn't there).  She had let her rest and quit trying when Dr. Stewart showed up at 5am.  He saw all the many attempts and decided to fix it himself.  So he put a central IV in, just below her left shoulder above her chest.  She can't really get to it, it's out of the way and shouldn't get dislodged.  Gotta love Dr. Stewart.  Her poor little arms are chocolate colored from her wrist up a couple of inches with bruises from the dislodged IV's.  This time she got in trouble for her feistiness...  They realized that she generally stays calmer when bundled up in a blanket, so they turned the heat off her bed and instead of letting her lay open with handcuffs, they put socks on her hands and bundled her up this week.  Well, I think that everytime they came to poke her foot or check whatever, she fought to get out of her blanket and let them know what she thought about it all.  Well, all that rubbing and fussing and moving her arms up and down in the blankets against her, is how she managed to dislodge both IV's on her arms.  Oh well.  She's doing better now.  Oh and I managed to salvage one of her handcuffs as a momento...  :o)

What all this means is that they took blood samples while she was still pretty upset throughout the early morning hours.  Well, the numbers were all messed up too.  The doctors say she looks fine, but they have to go with the numbers in front of them.  So they put everything as far as progressing goes on hold another 24 hours.  Put her on some heart meds to assist her heart and bring her numbers down. They kept her off starting with milk today and are not sure they'll let her start again tomorrow.  We'll see.  SO, maybe feistiness in a hospital isn't always good, but I do believe it will benefit her in the future with all her future surgeries. 

Got a call from the orthopedic doctor today.  He wants to start asap on her club foot to get the 1st process of correcting it done before her next heart surgery in September.  Plus, her bones are still cartilage and much easier to work with.  He does feel that her foot will need casting.  He will use the Ponseti Casting treatment on it.  Here's a link explaining it because I don't want to try to explain it.  http://www.hss.edu/conditions_the-ponseti-method-for-clubfoot-correction.asp  I talked to Lowell and we are going to have to do this starting this week.  He would have normally started when she was first born, but had to wait for her to be stable from heart surgery.  So, we have to have a new cast put on each week for the next 5-6 weeks.  More weekly trips to Cleveland Clinic.  Big sigh.  Whatever needs to happen, let's do it.  So, so blessed to have insurance...  Well, these first 2 casts will probably be put on while I'm still here.  I know this is not life threatening or anything like that, but just reading this article right now, makes me cry.  I can still blame it on hormones, so I will.  I'm easily overwhelmed these days... I don't know that feistiness will help Cayla when it comes to having casts put on and off her legs each week.  It sounds like it will be her enemy since she won't be able to pull or push them off... Lord-willing.

I can't say enough how special it is to be able to be there by her bed, put the side bar down and just talk, kiss, rub noses and faces and just soak her up for as long as I want to!  She rubs back and opens her mouth and soaks it up too!  I still feel like this is all a bit of a dream.  I miss being home and with my boys, but am truly blessed to be able to be here with her getting free meals and very inexpensive lodging.  God has blessed us beyond measure.  I feel His hand on everything that has gone on.  Even all the crazy stuff.  God has lessened her heart surgery and is giving her an actually pretty quick and good (for the most part, barring her feistiness) recovery. 

We are blessed too to have so many prayers being offered on our family's behalf.  This little line doesn't even come close to letting you know how much your prayers have meant to us!! God is working miracles in Cayla's body and allowing other issues to be there as well, but is giving us the grace to accept each problem as they are found.  We are being held by His mighty hand.  Lowell is having a taste of single parenting.  Getting them both out the door on time with breakfast and lunches packed.  He and Samuel are cleaning up, doing dishes and laundry, and the whole 9 yards.  Your prayers are helping them through all of that, plus being able to focus on work and school.  God is working in our lives and when you go through rough times, you see the hand of God in such powerful ways that I wouldn't trade this whole experience for anything.  I love how God is using it to change us all!  Need the prayers and covet them!  Thank you.  Thank you.  Thank you. 

Well, something light-hearted to end this post with.  Our 16 year old son Samuel is 6'2" and likes to sport a little goatee on his chin to prove he's got facial hair... :o)  Love him!  Well, it makes him look older than he is sometimes and in this day and age when so many young people are having children, people are more apt to jump to wrong conclusions.  During the first week he was here with us and Cayla, at least 4-5different times, nurses came in the room and looked at Lowell and Samuel and then went back to Samuel and said, "So you're the father?" This made me feel very young, but made Samuel and Lowell (Grandpa) feel very old... Well, it finally happened to me last night.  A nurse walked in and saw me standing there next to her bed and said, "Grandma?"  I laughed out loud after Lowell and Samuel getting it.  No, not grandma, but mommy.  I don't think she'll ask that again.  She was older than me too, which was odd.  I would have expected it from one of the younger nurses.  But oh well, it's all good!  I needed a reality check on how I'm starting to look these days... FYI, make-up doesn't cover black circles under your eyes... just thought I'd pass that tidbit of valuable info along.  :o)  Some pictures to close with... :o)

This is what greeted me Monday morning when I arrived.  Do you notice?  All her drugs and feeds were gone!  Nothing is turned on!  Later on they had to add calcium, but the morphine and who knows what else... all gone!  Well, up until this morning some are back on again, but still it was a welcome site then!

Cayla with her face being all pulled from the tape Monday morning.  :o)  Still my little cutie!

Grandma stopped by and got to love on her too!

The rest of these were from Sunday afternoon as Dad and Pat and Lowell and Samuel were all getting ready to leave.



Quick post-surgery updates...

From this Sunday morning around 10am that I posted on facebook:

 

"Cayla's breathing tube was taken out this morning at 7am! Her breathing on her own is slowly stabilizing. She still has what looks like an oxygen tube in, but it is just room air going through to help her remember how to breathe on her own. Hopefully she won't need that in for long. They said if she can't breathe well, they will have to put the tube back in... She's actually settled down now a...nd sleeping and breathing ok so that shouldn't have to happen, Lord willing.

Her catheter should be coming out today too. :o)

Dr. Stewart's surgical nurse practitioner came in to see about removing her drainage tube from surgery. She wanted to see her a little more stable before she will remove it. She'll be back later to check on her and try again.

We are unable to touch or talk to her during this time since stimulation is her enemy at the moment... I told Lowell they'll need to put the hand cuffs on me now to stay away...

Thanks for all the prayers!"

From this Sunday afternoon around 3pm that was posted on facebook:

Quick update on Cayla... Her eyes flutter open periodically. She did have some extra oxygen going through the tube this morning, I thought they said she didn't. But, they have cut the oxygen out and she is now just breathing room air. :D They still have her on a small morphine drip. Nothing compared to what she's been on. She's sleeping peacefully. They dropped her calcium line since she's currently retaining what she has. The surgical nurse practitioner came in again to check and said she's waiting to remove the tube again because there's still some fluid coming out. As long as the fluid is draining the tube will remain, but her vitals are where she wants them, for her to be able to remove it.

Quick update on me... everybody just left me. O.o Won't see Lowell and Samuel until Friday night. :o( Yes, I'm done crying for now. I must say it was hard to watch them all drive off. Dad and Pat are dropping them off on their way back to Canada. Incision seems to be fine. Didn't take anything for pain until a motrin at 3pm. Feet are still pretty swollen. Pumping and milk supply good. Ok, enough about me.

Quick update on Lowell and Samuel... they just left me and Cayla. O.o They won't see her again until Friday night. She will be a completely different baby by then. At least I get to be here with her this week as she progresses, Lord-willing. I feel worse for them, not being able to be here.  Samuel will be going through Starbucks withdrawl. Way too handy having their cafe mocha that close...

Quick update on Buddy... don't have one. Haven't seen the bird in 2 weeks. Hope he's not feet up on the bottom of his cage. Shouldn't be since the Strull's are supposed to be looking after him. Although their bird did die... ok, I'm tired. More later!

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)