Postop Day 3, Thursday, July 15

Natalie Clyde and her husband had visited me and Cassie in the waiting room, Tuesday night, I believe and brought us a care package. Junk food and m&m's for me :)  Sadie a princess nightlight for her princess room and a strawberry shortcake sticker book, and Katie had brought Sadie the stuffed lamb which she adores and laughed out of control when I'd give it to her and say baaaa....baaaa.  She was asleep when Katie saw her, so I took a picture of her with it for her.

Thursday we got moved to the floor.  Yipppeee.. Finally.   I set up my lap top and got some work done as Sadie continued to watch Tinkerbell.  That morning in NICU the nurse had got her out of bed when she was trying to do it herself and she very unsteadily and weakly walked a bit down the hall to find a video and toys.

By Thursday night  she was running the halls on the third floor saying hi.. hi.. hi to everyone and bye bye as she drove around in the lil coupe toy car and playing with her toys.

We were so ready to go home.

However, still on oxygen when sleeping and during the night as her sats wouldn't maintain while she was sleeping.

Postop Day 2, Wednesday, July 14

Wednesday Sadie was perking up and getting more sassy.  They found a DVD player and I got the Tinkerbell Lost Treasure DVD that Cassie had brought her and she watched this nonstop over the next 48 hours or more.

By evening the other 2 drain tubes had been removed (not without a struggle however..lol) and finally the IV in her neck, leaving the IV in her hand and oxygen.  The outer bandage from the chest incision site was also removed exposing the wound and steri-strips to the air to keep dry.  Though she was still on the medication to make her heart pump they considered moving her to the surgical floor to a private room on the floor that night, but there were no beds open, and so she spent another night in NICU. 

Sadie was doing remarkably well.

I, however, was totally exhausted.  At shift change at 7:00 the nurses told me to not come back that night unless they called me and to get some rest.   I left the hospital anticipating a nice long hot shower, a couple hours of work at the computer and an early night to sleep.   However, when I got back to the hotel my Uncle K was there with Cassie and they were waiting for me to go to dinner.

I was so wiped out and not with the program that for the second time since our arrival in Salt Lake on Monday I nearly got into a car accident by pulling out in front of a vehicle at an intersection.  Sunday was the first time when I had Sandi and her girls with me... with both incidences everyone is yelling at me and it was like slow motion in registering in my brain what they were telling me.

Dinner turned out nice, but I was totally spent.  I didn't get any work done Wednesday night and knew I wasn't going to make my line count for the pay period, but I was at the point I just had to let it go, and gave into the idea of sleep. 

Just as I was preparing for a shower the phone rang.  It was the hospital. Sadie was crying and the nurse couldn't get her to take her oral medications.  Sadie had slept a lot all afternoon and I think didn't get pain medication early enough, so she was very uncooperative, so I went back to the hospital and got the medicine down her and consoled her, and after a couple hours drug into the hotel and collapsed.

Postop day 1, Tuesday, July 13

Sadie slept most of the day Tuesday, but towards late afternoon became more alert and drank more liquids and was even offered fries, which she pushed away.  Today they removed the femoral line in her groin, which was traumatic.  I'm trying to hold her arms down without hurting her upper extremity and the nurse is trying to hold down her legs as she attempts removing the IV.  In the struggle Sadie snapped off her PEG tube to one of the chest drains.  The nurse calls over some more help.  The peg tube had snapped right off. They said this was only the second time they had seen this happen. The first time they ended up rigging it somehow to make it work.  They called the surgeon for recommendations.  As this drain wasn't draining hardly any fluid he opted to have it pulled and hope for the best, so we went through the drama of having to pin her down again and this time after removing the tube, cinch up the stitches there to close the hole. She was soooooooo not a happy camper.  Apparently, she didn't think they were removing things fast enough and helped out with that PEG tube.  Funny now that things turned out okay.. but it was so not funny then.   Things have gotta be more eventful than it should be with Sadie Mae.

Sadie was doing remarkable well, otherwise.  She is such a tough cookie.  

Dad had come up to the hospital with me Tuesday morning and stayed awhile to make sure she was out of the woods before he headed back to Cache Valley.   I'm so glad he came to be with us.

Monday night they let Stacia and Sandi come back into NICU to see Sadie, and Katie was upset she couldn't, but we asked permission the next day and she was able see her later in the week.

Now, I'm writing this almost two weeks later and my days and events of most things are becoming a blur. Hopefully, I'm getting the facts on who visited when and what on a correct time line. If not.. consider the state of my stressed being.

Surgery Day, Monday, July 12, 2010

 We were at the hospital at 7:00 to check in.  My dad was with me as we took Sadie back for her exam and changed into her hospital pajama's in preparation for surgery.  Dr. Burch came in and introduced himself and went through the surgical procedures, etc.

The day before in the lab Sadie and I ran into another girl, about age 10, with Down syndrome, dark hair and absolutely adorable, with her mother, who I learned later were Sarah and Donna.
We saw Sarah, Donna and her father in the waiting room before surgery and visited.  Sadie recognized Sarah and sat next her for a bit.  Then when they took us back to another waiting room, where the anesthesiologist and various other doctors visited with us we saw Sarah pass us again as they took her around to a separate waiting room. Sadie followed suite and ran around the corner and to Sarah's arms. The girls were absolutely drawn to each other.

Sadie has had the oral sedation medication before and it has just made her sleepy, yet she's always fought going to sleep, but this time she was on a high!  She belly laughed and giggled all the way to the surgery doors, patting my face and laughing.  I handed her over to the anesthesiologist and she giggled at him and was playing Helen Keller with his face as well.  She had everyone in the waiting room air and the doctors and assistance very well entertained.  It made it somewhat easier handing her over to them at the doors, but the short walk back to the surgical waiting area seemed very long.

 After surgery.  Joni commented the picture looked very similar, other than Sadie is bit. It wasn't as shocking this time around seeing her like this, as it's what I had expected. She really hated the ventilation tube

In the waiting room they gave Sadie a cloth doll in a hospital gown to draw the face and hair, etc., on.  While in the wiating room I put the hospital gown off the doll and dressed George in it. lol.

The surgery was about 5 hours long.  The OR nurse would come and report to be every hour or two.  It took them over an hour just to get her IV lines started.  Children' with DS aren't famous for good cooperative veins and neither is Sadie's gene pool.  She inherited her mothers sappy veins.

It then took a couple hours for them to cut through all her scar tissue.   I didn't realize how tedious this can be, being careful to not cause a bleeder, etc.  She grows an extraordinary amount of scar tissue.  I had expected this to be difficult, as well as the doctor was prepared for it as well.  Remove the wires and break through the sternum, again.

Then came the part I hate the most of all.  The heart and lung machine.  Knowing a machine is pumping her blood for her and expanding her lungs was a very uncomfortable feeling for me, and then the big moment is in anticipation for when they come in and tell you the surgical procedure is finished and she is off the heart and lung machine and pumping and breathing on her own.   What a relief.

The hours went by easier as I had my dad with me, my girlfriend Sandi and her two daughters Stacia and Katie, and Casie who kept me yacking, laughing and tried keeping my mind entertained. Stacie bought me a couple Cokes and fussed over me.   Dad slept some, paced the halls a lot, and answered calls from my siblings.

When it was all done the surgeon came out and took dad and I into a conference room and told us the surgery was a success for what they went in to do.  They removed the subaortic membrane and repaired the damage to the aortic valve.  He told us that though subaortic membranes and thought to be congenital he didn't believe Sadie's was, but rather caused by a stitch from her first surgery, and that it is probable that this will regrow and will need removal in the future again as many times as possible.  He told me they ligated the PDA (which I'm not sure why.. this was patched with her first surgery, as well as a patch/wall between the right and left ventricle, mitral valve and right artium).

He also said the tricuspid valve still had problems, that he could have purse stringed it, but then it would have constricted the already too small pulmonary valves, so he left that.   He also explained that if the membrane regrows and they go back in when she's more adult size, around age 10-13, they may consider her for 2 heart valve replacements, which surprised me.  I knew they don't consider DS patients for heart transplants and I thought the same went for valves, and so I asked him about this.  He said valve replacements are considered case-by-case.

All this was a lot to take in and I'm still not sure I got it all straight in my head or even exactly the way he explained it to me.  You'd think I'd understand the heart and how it functions, etc., by now. I should. I try.  I remember getting an A for a drawing I did on the heart in health, but then that was for my art skills I'm sure and not my brains.

We then had to wait another 45 minutes or so after our visit with the surgeon to see her in NICU.

They kept Sadie in soft restraints.  I had warned them how active she is and intolerant of Bandaids or anything on her and that she would pull out everything she could upon awakening. When she awoke she would jump as if startled and bolt straight up, as much as one can when hooked to so many things.  She hated the vent tube and would moan, but they didn't remove it til later that night because she struggled breathing on her own for awhile.   And thus began the countdown process at removing one tube or line at a time. 

After removing the vent tube they offered Sadie clear liquids which she guzzled.  Her lips were all puffy and looked like she had a lip job.  They kept her sedated pretty much and on morphine for pain, but she would do her startling jumping up thing often and kept everyone on their toes. She could not be left unattended at ALL. 

At shift change our nurse and I tried telling the new nurse coming on that she is very active and cannot be left unattended for even a second as she would bolt up and start grabbing at things.  She bawlked at this and acted like she was cool and could handle anything.. hahahaha... When I returned after 8:00 the first thing she said to me was.. "YOU were right"!!  and from then on one of us was always right next to her. 

Dad and I had run down during the shift change and go a burger.  Dad left earlier in the evening after we got back.  His eyes were blood shot and he looked absolutely exhausted. Neither of us had slept the night before and the stress had taken it's toll on us both.   I didn't dare look in the mirror.   I got back to the hotel late, took my meds and crashed until the next morning, knowing that while she was in NICU was the only time I was going to get any rest at all.

Sunday, July 11th, 2010, Preops

First, please ignore the dates on my pictures.  Obviously I need to reset them on my camera.  The date is truly July 11, 2010.

Sunday morning Sadie and I made the trip up to the hospital to have her preop lab work done.  I was an emotional wreck.  There had been some issues amongst family and some drama, and dad wasn't going to make the trip to the hospital to be with us.  I finally convinced him that I needed him there. He needed to be there.  Actually it was more my sister, Kathy, who convinced him that it was where mom was going to be and where he needed to be, so while at the hospital (waiting for the wee bag to fill by the lil princess) dad called me and told me he was on his way, and things worked out with the family dynamics.

We spent a few hours getting things done at the hospital, blood draws, etc.   Then as I headed down the hill towards the hotel I passed the turn and kept heading towards the Temple.  I wanted some time alone with Sadie to pull myself together and gain some strength, so we stopped at Temple square and spent hours in the gardens.  We didn't spend long in the visitor centers. Sadie's energy just wasn't up to it.  lol.

We did walk up to the Christus and Sadie was so amazed with the statue of Christ. When we first walked up the circular ramp up into "Heaven" where he stood... she'd pause in her tracks, look up and say "wow". On arriving at the top where Jesus stood a group of Spanish people where listening to an interpreter explain the gospel Sadie looked at me and said.. "sh" and then hollered out  "HELLO"  then "sh" and then "HELLO".  After the introduction, music started to play songs of Christ.  Sadie twirled to the music and paused to just listen.  She spent some contemplative moments at the statue.. and when families or groups would walk up to pose for a picture.. she would try to join in with them. She did this several times.  Silly kid.

 This out in the park where there are fountains and flower. So many flowers and peace on the Temple grounds.

 Dad called and said he was in Salt Lake and where was I.  I told him we were at Temple square and where to find us, so he met us there and spent the afternoon with us in the park too.


Then my girlfriend Sandi called. Her and her two daughters, Stacia and Katie, met as in the park too. Katie had come to meet Sadie at the hospital several weeks earlier when she had her ear tubes and grew a special bond with Sadie.  Stacia and Katie entertained Sadie well for awhile at the park, chasing her around and such.

I had mentioned to dad when he called that morning that Sadie had not yet had a Priesthood blessing. I went to the chapel at the hospital and met some Priesthood holders there and they gave me a name and number to call if I needed oil or a blessing, as I wasn't sure if dad had found oil yet. 

Jeremy called while we were at Temple Square as well and said him and Laura and Maeleigh were on their way to see us, and they met us there as well and I finally got a picture of the three of them together.  :)

We then decided we'd all go to Chuck-A-Rama for dinner.  I called Cassie and told her of the plans and Jeremy called Jessica and Clark so they could meet us as well.  They didn't meet us for dinner, but met us at the hotel after dinner.

Dinner was really nice. Sandi and her girls went with us and they got to meet some of my family.  Our hotel was right across the street. Dad got himself a room and we met as a family in my room.  The kids had so much fun with Sadie.  Maeleigh, Braxton and Sadie played and played, laughing and such.  I got to hold Baylee and play with her.  It was so nice having some of my kids and grandkids with me and to have dad there.  I really needed my dad there with my children and grandchildren.  It's been so hard with mom gone. Even harder than I ever thought it would be.  I need to feel family around me.  Life changed so dramatically with mom passing and not being there to hold everything together.  The evening was an absolute delight. Even Joni got online and played a small part in the evening.

Before everyone left for the evening dad participated with Jeremy and Clark in giving Sadie Mae a Priesthood blessing with Clark anointing and Jeremy giving Sadie a blessing. 

All was in order...The kids left for home after hugs and comfort given...and we attempted sleep. Sadie slept, well, yet glued to my side.  She knew something was going on and I believe a little unsure and anxious as well, but the day in the park and having the kids around to wear her down she slept.  She ate well at dinner, which would be her last for a few days.  She guzzzled drinks and ate whatever she want, fries, ice cream, pasta's, and such.

Sunday started out very tense and I didn't think I could make it through the day.

Sunday turned out to be a very very good day.

Saturday, July 10

The day had come.  It was time to head out and make our way to Salt Lake.  Sadie was excited because we were "going"... she loves to go.. go.. go...I did the last minute every things from making sure I had everything packed for the lap top so I could work, phone chargers, batteries and camera, and clean underwear..lol 
I so drug my feet getting out the door.  I didn't want to leave home.  I packed the last of things in the van, buckled Sadie up and backed out of the driveway.  I went through the garage and closed it and proceeded to lock up the house.  As I passed through the living room I paused at the picture of Christ and the little girl I have on my wall (painting by Greg Olsen, Forever and ever) I fell to my knees and once again poured my heart out and prayed we'd have a safe trip and to help me through the following days.

The first stop was in Eagle Mountain to see Jessica, Braxton and Baylee Ann.  I got some sweet pictures of Braxton and Sadie playing together. They have a blast together and get out of control silly.  Braxton will be having open heart surgery following Sadie's in September to have a hole in his heart patched.  He said to his mom one day after asking about Sadie getting her heart fixed... "Mom, Sadie and me, We have special hearts)"  and yes, they do.

We then headed into Salt Lake and to the hotel where I'd made us reservations. Cassie had flown in to be here through the surgery and such, and we met her at the hotel.   We hauled stuff into the room, and right now I can't remember much else of that evening.   Dad called and wanted to come down, and I had told him before when we visited over the 4th that he could stay over with us if he needed to when he came to Salt Lake to be with us the first few nights.

Count down to surgery

Sadie received one of Emily's smile box's, full of crayons, markers, TY beanie babies, and little things to take with us to the hospital to keep Sadie occupied.

Sadie loves to swing and would sit on grandpa's swing just waiting to be pushed, sooo when grandpa took us to Lowe's to find the parts I need to fix the sprinkler pipe I bought a glider/swing that she could climb in by herself and swing a little or we both could swing together.  I have yet to put it together... however.

and on our way home we took the long way through Honeyville and visited grandma for a bit, and I couldn't help be shed several tears and wonder what God had in store for us.. Would my little girl come through surgery okay? or would he call her mission over now that her mom has her life together somewhat, would she be there in the cemetery next to grandma?   So many anxieties and fears.

My friend and possible relative,  and photographer, TinaMarie was coming through Cedar City and she knew I wanted some pictures of Sadie and I together, so she stopped into meet us and do a photo shoot.

Because my anxieties, panic attacks and fears had the best of me, in worrying about how Sadie would fair through her surgery, and knowing she could have a heart attack at any time and without surgery she wouldn't be with us long anyway... I started hanging onto other's faith and feelings on her outcome.  During her time here at my house and doing the photo shoot in my yard and watching Sadie Mae TinaMarie had seen Sadie dressed in white, a few years older, at a wedding reception, and she told me she had the feeling that Sadie's mission here wasn't over and won't be until she sees me married to my eternal companion and being sealed to the person who is to be her father.  She told me this after her return home.  I've hung onto that, as well as others telling me they just had the feeling she'd come through things okay.   I knew I had to lean on others inspirations, as I was not trusting my own.

I knew I only had a few days before we had to head to Salt Lake and I was dreading each passing day, and yet I had so much to do try and prepare the house, etc., to leave.  I spent so much time trying to fix that dumb sprinkler pipe and finally gave up after many tears and just turned that part of the system off when I was gone. The house didn't get cleaned from our 10 day party with the girls. So much didn't get done.  I didn't get as much work done and never did get ahead on my line count... and after falling apart several times I had to just start letting go of the things that just had to take a back burner and were least of importance as the dreaded day drew near.

I had many friends from everywhere, family, and ward members who fasted and prayed for us on Sunday, July 4th (regular monthly fast Sunday for us mormons) and many other friends of other faiths sending thoughts, love and prayers our way.  I counted 17, that I know of,  LDS Temples that Sadie has been on the prayer rolls and prayed for by thousands over the the last few months.   I've been in awe at how many people really do sincerely care for us.

It's hard to explain the fear and anxieties a mother has over her child's health and well-being, especially a child who has chronic health issues and/or a heart patient... no one can truly understand unless you are or have been a mother going through similar situations.  It's torture.   I've spend hours on my knees, begging Heavenly Father for more time with.  I know he'll call her home someday, as he will all of us, but I'm not ready to give her back to him.  I don't think I ever truly will be, but I know he will.  I asked him to please, please, give me a few more years with her.   I feared God would put me to the ultimate test, and in a way he has.  Every day has been a roller coaster of emotion. Every day I've tried to enjoy ever precious moment with Sadie Mae, wondering when it will be the last.  I've developed so many sty's in my eyes the last few months from crying daily.

I finally have had to realize I have no control over most things in my life and I have turned it over to God.  He's heard my prayers, knows the desires of my hearts and I've asked him for more time and I know I must trust that he knows best and if and when he calls her home it will be for my own good......but I've asked him to please take this cup from me..   I know without the many prayers in our behalf and the help from the other side of the veil I never would have held up as well as I did..  I felt like I was taking the lamb to the slaughter. Sadie wouldn't understand what was going to happen to her.   With her first surgery she was too young to remember it and it just seemed so much harder in many ways this time around,