... the LORD gave, and the LORD hath taken away

"... the LORD gave, and the LORD hath taken away;
blessed be the name of the LORD."

Job 1:21

"Bless the LORD, O my soul: and all that is within me, bless his holy name.

Bless the LORD, O my soul, and forget not all his benefits."

Psalm 103:1,2

"I cried unto the LORD with my voice;

with my voice unto the LORD did I make my supplication.

I poured out my complaint before him; I shewed before him my trouble.

When my spirit was overwhelmed within me, then thou knewest my path."

Psalm 142:1-3

"In the day when I cried thou answeredst me,

and strengthenedst me with strength in my soul."

Psalm 138:3

"Cause me to hear thy lovingkindness in the morning; for in thee do I trust:

cause me to know the way wherein I should walk; for I lift up my soul unto thee."

Psalm 143:8

"He healeth the broken in heart, and bindeth up their wounds."

Psalm 147:3

"Hearken unto the voice of my cry, my King, and my God :for unto thee will I pray.

My voice shalt thou hear in the morning, O LORD.

In the morning will I direct my prayer unto thee, and will look up."

Psalm 5:2,3

"As for God, his way is perfect: the word of the LORD is tried:

he is a buckler to all those that trust in him."
Psalms 18:30

Overwhelmed but at peace; numb but feeling God's peace and strength; weeping yet calmly resting in His hands; heartbroken but knowing God is the healer of broken hearts; struggling to understand but very willing to trust.  I so fully believe and cry out every one of these verses to my Lord and Savior Jesus Christ who is everything we need to get through something like the loss of a child.

I really don't know what to write.  I do know that I need to write this out now while I'm still kind of numb and in shock and not later.  God has chosen to take our precious Cayla Joy home with Him in heaven.  I hurt.  Deeply. We all do.  I want to trust God's plan and I do, but the tears are ever on the surface and spilling over.  I will praise Him forever for the 2 months He gave her to us!  Very labor-intensive months, but ones I will never regret or forget.  Actually we had her and enjoyed her for more than those 2 months.  I enjoyed her, for the most part, throughout the pregnancy too!

What a strange and very sad day today is.  Cayla had a very bad diaper rash that we found out is from her little bottom problem.  She had just been to the pediatrician yesterday and seemed fine, even had her immunizations and seemed to do just fine.  She woke up throughout the night and just cried with no real provocation.  She spit up 3 times after she ate at 7:30 this morning and then when I fed her again at 10, I think she spit up one more time.  I went to change her diaper again and noticed it was not looking right at all.  She was kind of making this weird crying noise.  At this point she was unresponsive and actually never did regain that responsiveness.  So, Samuel and I hooked her up to the pulse ox machine and she was around 85-97 (only supposed to be between 75 and 90).  Then I looked at her laying on the bed and realized something wasn't right.  Her eyes had now rolled up in her head, she was whitish-purple, and was breathing really hard.  I called the pediatrician back to see if she was having a reaction to her shots and she said to bring her right in.  So, I knew this was another re-admittance to the hospital, got dressed and threw some clothes in a bag and ran out the door with Samuel.  She was almost in a trance.  Her eyes hadn't moved and she was very methodically making a strange noise.  I debated whether to take her to 4th floor to her pediatrician or the ER.  The nurse said that since Dr. El Gammal had just seen her yesterday that she would think I should bring her up to see her today and go from there, so I did.  I waited, in the room and finally went to the nurse and said, if she can't see her right away, I just need to go to the ER and get her on her way to Cleveland Clinic.  Well, the doctor came running in then, took one look,  called the ER and I don't know who else and thus it all started.  Dr. El Gammal carried her to the ER herself and spent the rest of the day by her side. 

They tried to life-flight her to CC, but couldn't get a chopper here right away.  Then when they arrived, she wasn't stable and never made the trip.  This all started around 10:30-11am this morning at home and she died at 3:05pm this afternoon.  They did everything they possibly could.  I didn't realize she was that serious the whole time until they asked us to go the family waiting room and a doctor would come talk to us.  Then I knew and couldn't believe it.  I was just so sure this was going to be another visit to the hospital, maybe even a long one, but then we'd come home.  That's when it hit me and I lost it.  While we were waiting for the doctor, Pastor and Mrs. Emery walked through the door!  They had heard we were here and decided to turn around and stop by to see us before we went.  A few minutes later the doctor came in and told us she was gone.  I'm not exactly even sure what the actual cause of death was.  Her bottom had become infected and got in her blood stream I believe.  The doctor said at one point she was septic, but I had no idea what that meant and asked her, but still didn't realize how serious it was.  I believe from what I've picked up, that her body didn't have a good way to fight that infection and so with little resistance it spread quickly right through her and to her heart and her little heart couldn't take it. 

Everything has happened so fast.  I am obviously still in shock or numb or something.  I'm sitting here writing after weeping for my baby girl that is now gone even though I'm not crying as I type and will probably cry again when I'm done.  But I'm kind of in a stupor as I type.  No, you know what... it's not a stupor.  It's answers to your prayers.  Underlying throughout this whole day has been a peace.  I honestly can only explain it as that peace that passes all understanding coming only from God.  He is everything in this situation.  He knows the beginning from the end, and I WILL trust Him no matter what comes my way.  He gave us this precious girl and has taken her back.  He can do that and we will give her back to Him and thank Him for the wonderful time He gave her to us.  I am not just saying words, I feel this truth deep into my soul.  God is in control.  To God be the glory for this beautiful little baby girl He shared with us!

It will be hard getting back into life after being so consumed 24/7 with Cayla and her needs.  God will give us all the strength to get through each day though.  I don't look forward to readjusting to life without her.  Samuel was really coming around and losing his inhibitions with her.  He was really feeling comfortable holding and handling her without feeling like he was hurting her or something.  He feels he should have spent more time with her, and Lowell and I keep second-guessing every decision we've made in the last week that maybe could have prevented it.  Please pray for us to not go down these destructive paths of "What if I'd..." or "Why didn't I...".   We know so many of you are praying for us and we thank you for that so, so much.  It's those prayers that have got us through this day already.  Samuel went ahead and went on the bike ride with the teens and others down the Greenway Trail this evening, and is down at the church cooking hotdogs at the bonfire.  I'm glad that was tonight.  It was good for him to get away and do that today. 

I am done talking/typing.  God is still God in our lives and will never change or alter in any way.  It's that steadfastness, faithfulness and compassion of God that is our strength.  If He's not been part of your life, don't wait any longer.  He's lovingly waiting for each of us to respond to Him and realize our need for Him.   He is a comfort that is unexplainable.  Thanks again for the prayers and support.  Love to you all.

She found her thumb for the first time. 



Samuel and Cayla bonding



Daddy getting Cayla to laugh.  The only time we were able to catch it on camera.



Dr. Magnuson, pediatric surgeon

I wasn't sure what to expect at the appointment with Dr. Magnuson last Thursday, June 14th.  He pretty much explained what all is going on with her bottom.  I had no idea, just that she'd need surgery, as Dr. Stewart said... "to move butt".  That's all we'd been told jokingly by him and nothing said by anyone else.  We weren't even sure what he meant by that.  So, a visit with Dr. Magnuson was very enlightening. 

Like I said, I had no idea what was wrong.  He said that the connecting piece between the bowel and anus was not in the right place and was most likely causing pressure to build in her bowel causing bacteria to grow.  So, when I told him about her diaper rash that is causing her to bleed and look bruised, he said it's all related to the problem he will need to fix in surgery.  The bacteria build up is apparently causing the problems with her skin.  If we can't get it under control in the next couple of weeks, he will have to put a colostomy bag on her until surgery.  Part of the problem is that connecting tube is being stretched since it's not in the right spot, making it smaller.  There is no muscle at the opening to control it, so this explains why we get sprayed when we lift her legs while changing her diaper.  The pressure is too much especially if she coughs, cries, sneezes, or hiccups.   There's more details I could go into, but I've probably said more than I should. 

The bottom line (pun intended) is that he will close up the current hole, move the tube over to where the muscle and everything else is set for it to be, open a hole there and we're good to go (pun intended).  I don't know, this is not the nicest subject to discuss publicly, so I'm throwing in some light-heartedness to balance it out.  Not trying to offend anyone.  :o) 

We will have to go back every 2 weeks now to see Dr. Magnuson so he can observe how things are progressing and determine what needs to happen while waiting for surgery.  He said he would have to talk to Dr. Stewart, her heart surgeon, as to when to do this surgery.  She has to be fully recovered from her heart surgery since she will be leaning and propped up on her chest cavity for a minimum of 3 hours.  I don't know when any of this will be now.  Initially we'd been told this surgery would be at 6 months old, and so Dr. Stewart said that he would put at least 6 weeks between surgeries for adequate healing.  That meant her heart surgery was to be in mid September and the bottom surgery would be in November.  All we are hoping for and praying for is that they can both somehow still be during 2012 to both be under this same deductible. 

Our last bill from CC said we needed to pay $62,000 by the end of June.  The bill only had insurance accepting to pay $22,000.  This isn't correct I hope, and Lowell is trying to sort out why it says insurance isn't paying for many of these things.  Just more ways to trust God.  The whole financial part of this process is stressful for Lowell especially and causing more dependency on God to take care of us and provide a way for us to pay whatever we have to pay.  God's been so faithful so far, I don't see Him stopping now.  :o)

We have a beautiful baby girl.  I still can't believe it at times.  God has been so good to us!  Thanks again for the prayers and support.  Oh, and by the way, could you pray for Cayla tomorrow, Thursday the 21st, as we take Cayla in to her pediatrician for her 2 month immunizations/vaccinations.  Not anticipating this to be a happy day.  We'll see.  I'm not even sure how many shots she'll need tomorrow.  Thanks again!  Gotta run... it's time to feed Cayla again!!  :o)

Pictures

Sweet dreams...  Still only been able to get her to smile maybe twice outside of sleeping. 
Neither of which I was there to see.  She smiled for Daddy and Samuel.  The day will come.  :o)
OK, I have to now add that this afternoon she gave me 2 big smiles!  The day has come.  :o)

Thinking about going home tomorrow for the first time... ;o)  This was on Sunday, May 20th.

Nurse Mary Lou came by to say goodbye before we were discharged Monday, May 21st.  She's so tiny and petite and so helpful, sweet and caring. 

Cathy, a wonderful lactation nurse came by to make sure I was set for going home to pump my heart out!  She even called me at home later that week to check up on me.  Such great people. 

Rosanna, my Amish friend came by to say goodbye.  Her husband gave me such a clear testimony of being saved and born again and wants to reach other Amish who don't really know Jesus Christ personally. 
She said she had no problem with getting her picture taken.  :o)

 

Daddy bought her a little going home present... she's so excited about it...



Little Cayla just had all the sticky monitors peeled off her belly and is not happy
even though it's a great thing to have them gone.  She'll appreciate it all later, I'm sure. 




Grandma with a ready-for-home Cayla Joy    :o)



First time outside in the fresh air waiting to get in the car to go home! 
May 21, 2012



First time in her car seat.   Didn't really work well with the cast on her leg, so we had to "jerry-rig" it. 

Arriving at home.

Enjoying her bouncy, vibrating, musical seat from Aunt Cathie! 




First bath at home.   Didn't really care for the washcloth scrub-down... Can't win them all.



She is such a Daddy's girl.  He can calm her down way better than I can. 
She will respond to his voice more than mine at times, but  I'm not bitter or anything.......  ;o)




Two sleepy-heads.  We're all a little on the exhausted side.  :o}




Little dress that jumped in my cart at Wally World... She's so cute.  :o)   All ready for her 1st Sunday at church (had to try it on after her bath on Saturday).  We never made it that Sunday though as she ended up in the hospital by that night, May 27th.



The little peanut... looking like my mom a little in this picture.





The paramedics had just put an IV in her foot and were ready to take her out and to Cleveland Clinic.



I could've just held her in my lap... it would've been so much lighter and easier to lift her into the ambulance... 
but they wouldn't listen to me... :o}

 

My accommodations in the PICU in her room.  The bench worked fine and wasn't too bad to sleep on.  Free lodging and meals provided since I was pumping.  We checked in around 11pm Sunday night and Monday morning, a gluten-free breakfast was delivered to our room.  God is so great to work out a "small" thing like that, but for gluten-free and on a budget, it was a huge thing!

  

On antibiotics because her white blood cell count was really high, but every test they took came back negative.  So  if it was an infection, they couldn't trace it and had no idea how it got there.  Lots of unexplained events that week.  This was her 3rd unexplainable "episode". 

 

Tuesday night Lowell, Samuel and my mother-in-law came up,
 and Lowell took this picture of the sun setting on Lake Erie from the roof top pavilion. 

 

Home again and loving life in the bouncy seat! 



Grandma Pat made Cayla this beautiful cocoon! 

Our family of 4!  We're all a little tired...

Some of the beautiful dresses Cayla has been given!  The yellow one is from our Pastor and his wife.  So delicate and soft!  The next one is from Ginny Klein from church who really did find a most beautiful dress complete with shoes!  The middle one is from Terena and Janice, my sisters in Canada.  So, so pretty with all the layers underneath too!   :o) The little pink jacket and flowers is from Tom Hayhurst, one of my favorite people at church!  He did a smashing job picking this out, it's beautiful Tom!  The little green one is a dress I found in my Grandma Brooks knitted baby things.  It's a dress she smocked herself and Cayla will get to wear it.  She put a big hem on it to make it last!  There's been more sent, but when my dad and Pat dropped in Monday night, these were the closest ones.  I hope I don't offend anyone by missing a dress.  They are all so beautiful and I so appreciate all the gifts people have sent and dropped by!  We are blessed indeed!  :o)

Cayla in one of her favorite positions. 

Big bro... Lil sis      Love it!

 

The little snuggle bunny.

 

Two peas in a pod.



Mommy time while feeding through the NG tube.

 

Her ultimate favorite position.  She turns over and curls up on her side, head back and hands curled in front of her. 
She's such a cutie.  :o)  Yes, I'm quite a bit biased. 

 

Heading down to her first Sunday at church. 



Got to see my brother John and his family

My brother John and Lisa and their 4 children, Ashlyn, Caiden, Collin, and Colten all got to come vistit last week!  Have never seen the 2 youngest, so what a treat!  I miss living near them in Pensacola.  Sigh.  Lisa, even though she has 4 to keep up with, pretty much waited on me hand and foot!  She never stopped the whole time she was here.  She did dishes, was constantly bringing me things I needed with Cayla before I even realized I needed them, washed and rewashed all my bottles and syringes and parafanalia all day, did laundry, helped with all meals to the point where I felt like I wasn't even needed.  She was such a blessing to me!  She nursed Colten while I pumped and we had great talk times.  :o)  She's such a great listener as I cried through the good and bad emotions, feelings and struggles going on inside me.  God knows what and who is needed at just the right time.  I am blessed to have her as my sister-in-law.  Thanks to all of them for such a fun refreshing time together albeit it was short, but maybe that's all for the best.  I don't think Lisa and John could have kept that pace up for long on their "vacation".   Samuel had a blast playing with all his cousins!  They followed him around like the Pied Piper.  He will miss them greatly!  He was so good with them, setting up and playing cars with Collin who couldn't get enough of the cars, and playing legos with Ashlyn and Caiden and then racing MarioKart on the Wii.  :o)



Samuel, Ashlyn and Caiden




The whole gang   :o)




Lisa and Colten

 

Samuel, Ashlyn and Caiden with the Legos





Colten

  

Lowell trying hard to beat Ashlyn and Caiden in MarioKart

 

John and his boys

 

Adjusting at home/ Doctor visits

When I sit down to write in the blog, I want to write everything out.   I realize that I don't have time anymore to really do this and feel discouraged that I'm not keeping it up.  I want to remember how things went during this time and how she progressed.  The only time I'm really in front of a computer is when I'm pumping.  With only one hand to type with, it doesn't really work.  I haven't really found a good time slot to sit and type.  I want to enter something every day, but have almost felt so far behind and missed writing so much that it's hard to know where to begin and so I don't type again...  I guess I just need to settle for short posts these days.  I can easily add 5-10 sentences on a facebook status, but when I pull up the blog, 5-10 sentences doesn't seem to be enough.  I feel like I need to write more.  Maybe if I settle for what I can handle right now with my schedule and just post short notes, I'll feel better.  Just sorting out my thoughts...

We've been home for more than a week now and doing well.  She seems to be doing so much better overall.  She's starting to get into better sleep/eat/awake patterns.  Granted it's every 3 hours so I still feel like I get so little done in between.  Oh well, seasons come and go and change before you know it.  This season will be over and then I'll miss it... ok, maybe not, but you know what I mean.  ;o)

I woke up Monday morning the 11th throwing up.  This went on from 7am until 1pm when Samuel started in on the party.  Lowell stayed home to take care of Cayla as I stayed away from her and wore a mask.  I wasn't sure how I'd feel by Tuesday morning when Cayla had 4 appts. at Cleveland Clinic, so Lowell took Tuesday off and went to all her appts with us.  It was good he did.  He got to meet Dr. Gurd and to see Cayla get her cast taken off and a new one put on.  This is her last cast, but it will stay on for 3 weeks.  They also fitted her for her braces and shoes she'll wear as soon as this cast comes off.  I mentioned Cayla's spine to Dr. Gurd and he said he's looked at it and plans to discuss it with us when we get through the club foot casting and on to just braces.  He asked if we'd seen the x-rays of her spine and we hadn't, so he pulled it up on his computer.  He said that a typical spine looks like little rectangles with 2 circles under them.  Like the side view of a child's wagon.  There are supposed to be 2 circles between each vertebrae (you know, I really hate trying to describe stuff I know I'm not getting right, but oh well...) and there is one spot on Cayla's mid to lower spine where it looks like a disc is missing on one side. Well where this is, has caused the 2 vertebrae to touch and almost fuse together, thus causing a fanning out effect on the other side and causing her spine to curve.  This is also where 2 ribs have come out of that same spot and instead of being separated like all the others, are fused together.  I had never seen or heard anything yet about any of this, so it was very interesting to find out.  He said he'd go over what they might be able to do with her spine at another appointment.  So, that will be apparently be next on the list of things to correct on Little Miss Cayla Joy.  We did run her up to 12th floor to get her weighed with no cast on, and she now weighs 8lbs. 15 oz.  :o)  She's doing good at chunking up for surgery.  There's no set weight she needs to be at before her 2nd heart surgery in mid September, just that she steadily gains weight between now and then.  She's doing fine.

We then took her up to see the dietitian/nutritionist.  She increased her intake slowly over the next 2 weeks from 1.75 oz. every 3 hours to 2 oz. every 3 hours.  She doesn't eat much, but she is eating fortified breast milk which is fattening her up pretty good.  I have to add a whole tsp of Similac Advance to every ounce of milk.  I think it sounds like a lot, maybe it's not, but it's really upping her caloric intake. She's not done as well with bottle feeding since we've been home this second time.  She literally just poops out after 25-30 ml of milk and just can't seem to get herself to take anymore.  So the rest is given by the NG tube in her nose.  The first week we were home, it didn't take her long to be able to drink all 45 ml from the bottle.  She still only does bottle feeding every other feeding to give her a chance to rest in between.  It really is hard work for her to bottle feed.  They call it aerobic exercise for her.  Although this afternoon for the first time since we've been home this 2nd time, she took 45 ml in about 5 minutes.  She did spit some up about 45 minutes later.  I don't know.  They aren't really worried how she's getting the milk, just that she's getting it.  So we'll keep working away at it.  She is also able to still breastfeed randomly which is good. 

Our last appts. were back at the Children's Hospital building with the cardiologist and had some blood drawn.  Dr. Erenberg checked her out and said that her heart, incision, and overall appearance looked great.  We will go back in 3 weeks when she gets her last cast off and then will have an echocardiogram and set a date for her heart surgery.  Since her first surgery was so much easier than the expected Norwood, this 2nd surgery, the Glenn (I think that's what they call it), will be more invasive and involved than her 1st, where usually it's not as bad as the 1st.  But the success rate is still around 95% for this one, so we'll see.  Right now and for the next few months, she shouldn't have any major health issues and be a somewhat normal little baby girl.  We did take her to church for the first time last Sunday which was so exciting to show my sweet little girl off.  :o)  She did great.  Right now the worst thing she's dealing with is a really intense diaper rash that we hope to have the pediatrician give us a prescription for something stronger tomorrow.  It looks bruised and slightly bleeding.  Dr. Erenberg gave us a prescription yesterday, but it's not working, so we're hoping Dr. El Gammal can give us something that will. 

In another post, I'll have to write about Dr. Freedman the neurologist and share his letter he sent us.  He is the first doctor to give us a complete report that covers all diagnoses from all specialty doctors in one report.  He was very thorough and gave us many words to look up and see what they mean to know exactly what Cayla is up against.  I've been wanting a report like this to really be able to see what all is really going on with her now that they've had time to do their reports.  He is also the first one to mention her nose again, since Dr. Rajabi mentioned it back a couple of months ago, about it not having a tip or something like that.  So far she looks pretty cute with her nose the way it is, but maybe she'll grow and it won't... I don't know.  Just one more thing to have to look at.

Tomorrow, Thursday, I have 2 appointments.  The first is my 6 week check-up (even though it's now 7 weeks) with Dr. Rajabi to tell me I need to sleep and drink more... :o}  He doesn't usually do appts. past delivery since he's a fetal care specialist OB/GYN.  But since my OB/GYN here in Ashtabula got fired, I mean, is pursuing other interests, I've been told to finish this one up with Dr. Rajabi and find a new one in town.  They say the one that's replaced her is really good, but I don't think I really need one any time soon at this time, so that can wait.  My 2nd appt. is at CC with Dr. Magnuson, another surgeon.  This is the surgeon that is going to operate on her little bottom in November.  This is the first appt. we've had about this, so we'll see how bad it is and what they can do.  You know, Cayla didn't have to have the Norwood heart surgery since God placed her aorta on the "wrong" side of her heart, but she sure seems to be making up for it with all these other anomalies going on.  I believe she has been clinically diagnosed with the DiGeorge Syndrome, which is what is possibly behind all the issues she has.  Who knows?

Next week, there's no Tuesday casting, but I think Thursday is Cayla's 2 month checkup with her pediatrician.  She will get vaccinations then too.  Not sure what she really needs or not with her heart and weaker immune system.  Still researching this.  Any input would be great!  I know many have opinions about immunizations, but I feel like I don't have a choice since I don't want to risk anything with her.  I know some vaccinations lead to autism and other problems, I just need to look it all up and figure it out.

Well, dishes didn't get done, or laundry, or washing of syringes, etc. because I've been writing here.  So, maybe I can just add some quick notes here and there over the next weeks.  As far as a prayer request right now, it's my time in God's Word.  I have to admit that it gets pushed aside for "more important" things.  I do pray for people and situations as I hear about them and whenever God brings them to mind, but I need much more than that.  I am trying to work up a schedule to make sure everything gets done that I want to get done.  Also, I saw today a post on fb that a little hypoplastic left heart syndrome baby that Cael's mom knows, died yesterday, I believe.  I cried and went and got Cayla and just held her.  I am so thankful for all God's done in her life already.  She has many hurdles to cross, but they don't appear life-threatening.  God has worked great things out for her and I praise Him for all He's done with her life so far.   Thanks for the prayers and I look forward to posting some more much shorter posts.  I'm off to feed Cayla again. 

A busy morning

It's Friday morning and I do believe someone said it's June already!  Amazing.  I stayed up with Cayla last night just holding her between her 10pm and 1am feedings.  Then after pumping I went to sleep.  We all woke up at 4am when the nurse came in to feed her through the pump.  I thought since I was up I'd pump again too.  So about 4:30am or so I went back to sleep.  I was awakened by Dr. Gurd tapping my shoulder at 6am ready to put her cast back on.  So the day started.  They put her new cast on and it's much bigger than the last two, but oh well.  I got Cayla's 7am feeding ready and started that when the nurse came in and said cardiology was ready for her ecocardiogram... I must have missed that memo.  :o)  So, we took off to her eco and finished eating while there.  At 8am, the sonographer said she was done and would go get the doctor to see if he wanted to look at anything.  Well, about 8:15 I asked them if the doctor was coming because I had another appointment with Dr. Freedman the neurologist at 9am.  She said Dr. Lorber was the opening lecturer this morning and hadn't come back yet.  I told her I really needed to get back since I hadn't eaten and wasn't willing to be late for the next appt.  Plus, an eco with Dr. Lorber is not quick.  They said that was fine and he'd just look over what was done by the sonographer. 

We had just got back to our room, sat down and started 2 bites of my breakfast when they said transport was here to take us to our next appt.  I asked if they could wait 5 minutes and they said to just call for transport again.  Well, that would take forever, so Misty the nurse's aid took us over.  This was a first... to arrive and see a doctor standing in the lobby waiting for the patient!  Dr. Freedman check her out from head to toe with all her nerve endings and reflexes and who knows what.  Very nice man and explained some of the genetic reports that I hadn't known about.  They've pretty much put Cayla in the DiGeorge Syndrome category even though she has the 22 Q 11.  She might have a slight deletion on that particular piece at another level down in the chromosome chain.  I really don't understand it all. 

Then he said the occupational therapist was ready to see her now.  Missed the memo on that appt. too.  Oh well.  She took out all her books and charts and started testing Cayla's responses and abilities on her charts.  She said she'd send me her report in the mail.  Cayla did well for the most part, but if you're going to work with a baby who's only wearing a diaper then turn the heat up... Anyways. :o)

We finally got back to our room and the cardiologists spotted us back and said they  missed "rounding" on Cayla, so they all gathered around.  Not much to say, but I asked about needing oxygen at home... No, and if there's any other signs to look for to let us know if we need to bring her in again.  No, we did good bringing her in this time.  We discussed future doctor appts that they want Cayla to have and as long as I don't have to set them up, I'm good.  I'm so tired right now.  Cayla's sleeping and I came down for a minute to check the internet before going back up to eat lunch, pump and feed Cayla and the cycle continues... 

Well, just a quick update.  Looking forward to seeing my mother-in-law around 4pm to pick us up!  :o)  God is going to have to keep me going because I can't think straight anymore.  He's done it before, He can do it now.  A verse that just came to mind is:

"Fear thou not, for I am with thee.

Be not afraid, for I am Thy God.

I will strengthen thee, yea I will help thee.

Yea, I will uphold thee, with the right hand of my righteousness."

Isaiah 41:13 maybe?  I can't remember the reference at the moment.  :o}



Back at Cleveland Clinic but being discharged Friday!

Well this is the first time this week that the computer has been working here at the Ronald McDonald family room in the hospital.  I've been wanting to post something all week, but haven't been able to.  I'm thankful for Lowell and my sister-in-law Lisa who've posted updates on facebook for me throughout the week. 

Last Saturday evening the 26th, Cayla was crying through nap times and started this whole routine of being inconsolable for some unknown reason.  It's so hard with babies when you have no idea what's bothering them.  We had a rough night as it got worse.  None of us were getting any sleep.  Just when we thought she was going to sleep, she would start whimpering a few minutes later and work herself up into a frenzy where nothing would console her.  By Sunday morning we were all exhausted and then when Lowell got back from teaching Sunday school, Cayla threw up on him as I left for church.  He said he'd be fine.  She looked like she was going back to sleep.  I got to enjoy being back in church Sunday morning thanks to Lowell watching Cayla.  When I got home, he was looking very frazzled and tired.  I started noticing her breathing was getting really uneven and labored.  Later in the afternoon, Cayla projectile vomited down me.  She has never spit up at all, not even a little bit, so this really started me wondering what was going on with her.  Lowell had taken a nap and the first thing he noticed afterwards when he went to check on her in the bassinet was her breathing was now retracting to the point where it looked as if every breath was like a hiccup.  I wanted another opinion, so I called our home care nurse, Elaine Lux.  Elaine and her husband Bob are the ones that started the Sonshine Corner Christian Bookstore 30 some years ago.  She was excited when Cayla's name came up on her list of patients to visit!  How awesome that God gave us a nurse that we already knew and is a Christian!  She said she was coming up to Ashtabula to run some errands and then would be able to stop by and check on her.  Cayla was sleeping for the 1st time, so I told her there was no hurry.  She had just seen Cayla on Tuesday and took one look at her and said we should take her in.  Her color was much whiter than she'd been Tues. and with her breathing and overall look, she didn't think she looked good at all.  Lowell had just called the night nurse at CC and she said to bring her in too.  Problem is that they don't want us driving her to CC, but to check her into the nearest ER and get medical transport to take her and stabilize her.  So, we went to ACMC in Ashtabula and the ER doctor took one look at her, read the discharge papers we had about her condition and immediately called for transport.  By 7pm I asked if I could feed her since it was time and they said yes.  Well, I wasn't thinking about her throwing up earlier and within a half an hour after feeding, she threw up, projectile style, on Lowell twice in the ER.  They took a chest x-ray, drew blood, and who knows what else while we waited.  When the paramedics arrived to take her, they put in an IV and off we went.  I rode in the ambulance and Lowell, Samuel, mom, and Cathie, followed behind.  They started giving her fluids on the way since she was looking dehydrated.  Thus, we arrived at CC.

If I continue this detailed, I will never get through the week... :o}  Oh well, we started in the step-down unit where we were discharged from the previous Monday, but by the time she threw up again that morning with blood mixed in and extremely lethargic and weak, they moved us to the PICU (Pediatric Intensive Care Unit).  I don't even remember all that's happened this week as I sit here needing to go back to her room, so I'm going to jump ahead to say what they've concluded as they get ready to send us home tomorrow. 

They thought it was an infection so they started her on 2 types of antibiotics.  Today they said all tests, and they took many, have come back negative and there was no infection.  Her white blood cell count was really high and actually is still somewhat elevated today, but otherwise she has stabilized.  She would lay there as they were poking needles all around her arms, legs, and head and not shed a tear.  Most of the time she barely flinched... this is not our precious Cayla Joy... She was pretty sick, but she is doing so much better now.  The cardiologists are clearing her of this being heart related, but are very concerned because they have no idea what this was, where it came from, or why it started.  This is like the other 2 "episodes" she's had in the past that led to the breathing tube and other set backs.  They had no idea what caused this in the past or what caused this all this week.  They want to find out what is triggering these episodes.  They are calling in Endocrinology, Immunology and the genetic doctor to re-evaluate and dig deeper into what's going on in her little body.  They tested her thyroid today and tomorrow I have an appt with neurology as well. 

Last night her IV in her foot quit working and they tried to put in another and couldn't after many tries.  So they had to give her the antibiotics by 3 needles in her thigh.  She was so worked up that an hour later, even when laying quiet and still, had her blood oxygen level in the 60's and occasionally dropped to the 50's.  So she was on oxygen last night, but was fine this morning without it. 

We would ask for prayer that someone, somewhere, somehow would be able to trace the source of what sets her body off like this.  They said that this could very likely continue happening periodically until they determine the cause.  Immunology can't do much until she's a little older, but have said to treat her with even a little more caution as far as being around anyone remotely sick and to diligently use sanitizer.  So, please don't be offended if we ask you to stay away or wash up first. 

Dr. Gurd did come by today and her cast was removed, but they were unable to return to recast it, so Cayla is enjoying a break right now from having a cast on.  :o)  Tomorrow it will probably be put back on.  Her foot is actually straightening out already.  I left the camera with Lowell when he left Tues night so no pictures.  Oh well.  :o)

I need to get back but could type forever with all that's going on.  I'm just glad I've been able to finally get to a computer for the first time since Sunday.   Thank you for your prayers! We're looking forward to being home tomorrow again and give it another try at home.  We didn't quite make it a week last time, so we're going to beat that and set a new record of length of time at home.  Love to all!  :o)

Adjusting to life with a one month old

This first paragraph was a note I wrote yesterday on facebook and thought I'd start by reposting it here and then add a few notes.

We're doing well. Cayla was a month old yesterday! Hard to believe, yet in some ways it seems like she should be 2 by now... I got more done by 10:30am yesterday than I did all day Wednesday. :o) I was able to make it to revival services at church last night! Very good. Worship is private. Worship is intimate. The results of intimacy with God are seen publicly by everyone we meet and lives are changed... Looking forward to a good day today. Trying to get the whole 3 hour schedule down. Her feeding times get done every 3 hours, but I can't seem to get much else done in between. Still adjusting. Oh, and she pulled her feeding tube out last night so we got the privilege to put a new one in all by ourselves with no nurses to help. It was stressful more emotionally than the actual difficulty of doing it. I realized I didn't get tape, so I need to ask for some today at Hillcrest. Thank you so much for all the prayers for us. I will try to post more later, but have to go get ready. God's been faithful!

Had a good Saturday.  Lowell and Samuel took over and let me sleep more today!  :o)  They did dishes and took out all the trash, and Lowell cleaned up the dining room and living room... quite a feat when the dining room table was buried under a foot of hospital stuff that'd been dumped there.  Plus Lowell attacked the room that has some leftover stuff from the store in it that I've been wanting to get to for months now.  He almost has it cleared out.  He so good! 

Something's been bothering Cayla and making her cry at a moments notice and then working herself up into a frenzy.  She's not allowed to do that because it sends her pulse ox down below 82 (amount of oxygen in her blood)  and yes, that's really low and not good.  For her, it should be between 82-85, not lower than 75 and not higher than 90.  Plus it sends her heart rate up.  So, I do believe she's going to end up slightly spoiled at the moment since we have to pick her up and calm her down.  She has pretty much got to the place where she falls asleep in our arms.  Not that I mind, but I do want her to sleep without being in someone's arms... which she does, but we're headed in the spoiled direction.  Gave her some Tylenol this afternoon and she was like a whole new baby, smiling and no tears.  We see the cardiologist Tuesday and will see if there's anything causing these outbursts. 

She's just precious is all I can say.  Well, not really, apparently I can say a whole lot more, but you know... Overall she's doing so well.  She's gaining weight.  I was able to get her weighed between taking the cast off and putting the new one on.  She's up to 7 lbs 12 oz.  Well, that was Tuesday morning.  I'm sure she's more now.  We get to go again Tuesday for another cast and weigh in and visits to the Cardio Pediatric nutritionist, Dr. Erenberg her cardiologist, and the doctor in endocrinology to see how she's doing with her calcium.  She will be on calcium supplements the rest of her life.  They are trying to adjust it to just what she needs.  She currently takes about 5 and 1/2 tsps a day.

Looking forward to being back in church on Sunday morning!  I've greatly enjoyed revival services this week even though I only made it Thurs. and Fri.  Looking forward to hearing Dr. Roger Green tomorrow morning and evening!  Love my church family and have missed them greatly!  We were given clearance on Monday by her Drs. that Cayla can go out in public, obviously with caution.  Lowell said that Cayla's doing so well, we might take her and take turns sitting with her through Sunday school and church.  :o)  We'll see.  They cleared her to be able to go to daycare, so I figured church can't be too bad... Who could put a baby with so many needs at 4-5 weeks old in a daycare? Anyways. 

Well, this is just a quick update.  I feel bad I've not been able to write this week.  Many things have happened that I want to remember, so I might try to back up and write more later.  Have a blessed day in church tomorrow!  :o)

Our last night (for now) at Cleveland Clinic

It's our last night here.  My time warp bubble is about to pop, and I can get back into my former life again.  Although it will be strictly dictated and scheduled by a little girl I got to know recently...  For the last 3 days, I have done all the tasks associated with feeding and and taking care of the Little Miss Cayla Joy.  I have not done it through the night, but do so look forward to adding that to my repertoire... 

We are so blessed and have so much to be thankful for!  We have a beautiful baby that God has blessed us with.  She is such a trooper and has pretty much just learned to deal with all the monitors poking and digging into her arms and legs as she sleeps.  She won't know what happened when she sleeps tomorrow with them all gone!  She likes to lay still and study her surroundings before she falls asleep.  She wakes up stretching and cooing with an occasional cry, but overall, despite everything, is a very content little baby.  She just loves to stare at us while we talk to her.  I almost forget sometimes she even has problems, she seems so content and normal.  She will just have her little NG tube in her nose until her next heart surgery in September.  She just doesn't have the strength or stamina to suck and swallow the amount she needs to eat.  So pumping her milk in the little nose tube directly to her stomach is what she needs to stay strong and gain weight to be ready for surgery.  I will only have to put her pulse ox machine on her once a day to get a reading of her heartbeat and level of oxygen in her blood for the doctors, but it will not have to stay on 24/7 anymore! 

We are so thankful that she did not have to have the Norwood surgery, just simply a complete miracle of God!  Her aorta is misplaced right where God intended it to be!  That is just amazing!  We would still be at the hospital a couple more weeks or worse if she'd had that surgery instead of just having her pulmonary arteries banded. So, so thankful to what God has already done in her life! 

We are so thankful for Cleveland Clinic and all the wonderful care we've had while here.  You know, I don't think I ever really went into what happened during Cayla's delivery.  The problem was that the spinal anesthetic thing, can't think what it's called at the moment, was not working on me, and they did it twice and neither one worked.  So... when the knife went in, I still felt it.  A freak kind of thing.  Everything was reviewed and done by the textbook, but for some unknown reason, they didn't work.  Within minutes Lowell had no knuckles from me squeezing his hand, and he was telling them to "Just knock the woman out!"  Which they did.  I had so many narcotics and drugs pumped into me in such a short amount of time that I was unable to eat or drink anything for 18 hours after the surgery.  None of it went to Cayla.  I guess I should say that feeling the knife didn't seem as bad after the second dose they gave me, so I thought I could just endure it... trying not to complain or cause trouble... But by the second incision, I thought I was dying and couldn't really talk, yet for some reason they knew I how I was feeling by just looking at my face... OH WELL, all that to say that they have no explanation as to why it didn't take and should in the future.  The nice thing is that the $1,750 anesthetic charge on our bill for that day said, amount insurance pays = $0.  Amount you pay = $0.  So they removed the charges for all that mess of stuff they did.  The 2 doctors came to visit me in the NICU, I guess they want to make sure we don't sue them or something.  All's well. Cayla came out fine, so that's all that matters!  :o) 

We have really felt so well cared for!  Every single day we've been here, a team of doctors, anywhere from 5 to 15, have come by her bed and discussed her stats and what to do for her for that day.  When you have doctors from cardiology, respiratory, immunology, endocrinology, surgery, pediatrics, neonatal, nutrition, and nurse practitioners and nurses all discussing her care, you get way more than a second opinion, you get them all balancing each other out in all their different departments and expertise.  I have felt such confidence in all the care she's had while here.  So, so thankful for that.

We are so thankful for the many, many family and friends that have prayed us through this first step in Cayla's life.  God has done miraculous things because of those prayers.  The social workers and lactation nurses and our case worker have all been asking how we're handling all this.  I love when they ask because I get to talk about my support system of family, of church family, of prayer warriors on fb, and prayer warriors on the blog.  I get to talk about Jesus Christ.  We are so blessed!  Five to ten years ago, there wasn't such a presence of people online with something like fb.  What an amazing thing that is.

I am so, so, so very thankful for my family. Lowell and Samuel mean everything to me and we are all so excited to start this whole new journey together with Cayla joining our family.  God is so good.  I used to tell people that of course I wasn't going to have only one child.  I loved having siblings and wanted Samuel to have them too. I just didn't think it would be so much later that they're both going to almost be raised as only children.  :o)  God's ways are perfect!!!  I wouldn't have chose this, but God did, so I'm ok with it all!  Plus, we live up here where my in-laws are and what a HUGE blessing they are to us!  I am so thankful for extended family!!  They've all been taking care of us.  Can't say enough for my mother-in-law who took me to all appointments and visits but one, out to Hillcrest and Main Campus.  Such amazingly great family that loves us!  :o)

Well, I could keep going, and will at another time, but it's late and there's much to do the next few days.  So, thanks for the prayers and love and encouragement!  :o)

We're going home Monday!!!

We are set to be discharged on Monday!!! This is my last night alone here and I am going to try to get another 8 hours of sleep tonight. Plus, I didn't cry tonight when I left... not sure if that's good or bad... :o} I cried plenty of tears during the day to our insurance company, just bawled my eyes out while trying to settle the issue, to Edgepark Medical Supplies too and to Lowell and to Nurse Mary Lou and to Cathy the lactation nurse, and to the nurses out in the lobby and to Cayla. Everyone is so nice when you're crying... I think I just cried almost all my tears out earlier, but I did cry back here at RMH when I thanked the volunteer for all they've done for us. She said it's nice hear someone say thank you. She said many people don't take the time. Just can't say enough about this place.

Did I mention that WE'RE GOING HOME (Lord-willing) ON MONDAY?!?!? :o) I will be glad to be out this little time warp bubble I'll have been in for 4 weeks and sleep with my precious baby girl in her own bed... :o) Thanks for all the prayers!