The Day Sydney Was Listed For Transplant

Fourteen years ago today Sydney was placed on the list to receive a life saving heart transplant. This is an open account of my feelings today and of her story as I have been able to piece it together from her birth family, and some medical records from the state when we adopted Sydney.


Sydney was one of the fortunate CHD babies as she was diagnosed in utero at 18 weeks with HLHS (Hypoplastic Left Heart Syndrome). Babies with HLHS have an underdeveloped left side of the heart and aorta. This is the side of the heart that provides the body with fresh oxygenated blood. They can look perfectly normal at birth until the PDA begins to close. They have to be placed on IV medications to keep their PDA’s open to provide their bodies with oxygenated blood.

When Sydney was born the Norwood surgery (the first of the three surgeries for HLHS) was still in its infancy, most likely she would have not survived the surgery. The only option for Teresa and David – Sydney’s birthparents was a heart transplant 650 miles away at Loma Linda Children’s Hospital (LLUMC). Primary Children’s did not provide neonate transplants at this time and their recommendations had been palliative care. Teresa flew to LLUMC alone when she was 32 weeks pregnant. Leaving everyone she knew behind – no husband, no other family just her alone at the Ronald McDonald House. While she was there her Dad died – because she was 38 weeks along she could not travel home for the funeral – She stayed the course and followed her plan to give Sydney the best chance at life.

Right on time Sydney arrived – 7 pounds even, and 20” long -- perfect looking on the outside with a massively compromised heart on the inside. Teresa’s mom was able to come and be with her when Sydney was born.

Sydney couldn’t be “listed” for transplant until she was 7 days old. Her testing took a little longer and on the 24th she became active on the list. Some babies wait weeks or even months – Sydney was lucky they received an offer of a heart the next day. Little is known to us about her donor – Teresa told me that he was 2 days old. I have tried to imagine what his parents went through. How does a parent say goodbye before they have really had the chance to say hello?


We have never met or heard from her donors family yet our lives are tied together forever. Their son saved our daughter – in what I can only imagine were some of your greatest moments of grief they made the choice to donate his organs. Thank you seems inadequate – even trite. How do you thanks someone for saving your child? As I type this I wonder where they are today – is today his birthday? Do they understand the awesome gift they have provide to Sydney? How in a way their son still lives on as his heart beats in our daughters chest? His heart has never failed her it was and is the perfect match in every way – it has been comfortable there from the start beating in her little chest.

Fast forward 18 months later – I went to pick Sydney up from an Aunt and Uncles home to have her placed into our home for foster care. We were the only medically fragile home open within 2 hours of PCMC. The day before had been the third time they had called us about her – the other two times I said “no”. I knew she was meant to come to our home but (and this sounds terrible now) we had four little girls, a foster/legal risk baby boy and I wanted to be done! I was 24 years old and had five little ones at home 10 and under – I must have been crazy! I didn’t know if I could do it with one more – and one with a heart transplant. I remember calling the transplant team and while on hold praying that they would let me off the hook. Nope – Marian told me how easy Sydney would be to care for….. My heart melted when I met her and I knew she’d be staying forever --

The next day we had our first transplant clinic at Primary’s – I was scared and then I met Dr. Shaddy. Talk about a “D” personality on the DISC (look it up). I remember him looking me squarely in the face and telling me that he would not have her bounced from home to home so if we were not committed to keeping her to move her now. What a ride it has been since then –


Our Sydney girl has overcome so many difficult things – massive infections, aspiration upon eating and aspiration with reflux, a feeding tube, a port, post transplant lymphoma, a zillion heart caths and biopsies, more infections/antibiotics than I can count, 7 sets of ear tubes, and I don’t know how many days totaled to how many months in the hospital. As Sydney become more well and could attend school on a regular basis we learned that she has some learning disabilities along with a genetic syndrome. These have never slowed her down – she just does things in her own way and on her own schedule. Sydney has been able to know and love her birthparents / families through open adoption. Sydney is one of the bravest people I know. She is feisty and a fighter.

I cannot imagine how different our family would have been without Sydney. Tonight an extra prayer of thanksgiving will be said for her donor and his family, for those who made her transplant possible, and those who continue to care for her. I have heard people say that miracles don’t happen – they should meet Sydney.


If you have not considered becoming an organ donor please consider becoming one –


Much Love,

Ang

Watching Children Struggle

The past few months have been a mental health struggle around our house. Maggie has her issues -- that has not changed. However, something odd has been going on with Miquela -- she has been upset and having screaming fits and becoming violent. This has happened at work, her pro home, at respite and when she comes for home visits. We have done some mixing it up to see if less or more visits would make a difference and it has not. The question is if it is neurological, mental health or another developmental issue.

Yesterday Miquela had an emergent appt. with her neuro-behavior doctor due to a huge outburst and destroying her room, being suspended from work and the list goes on. As the appt. ended Miquela had a freak out about leaving and not having a treat. She began to kick the doc and refused to get up. Hospital security was call -- the hope being that she would calm down and be okay to get into the car. However, as we have seen for the past several months she continued to escalate. SLCPD was called and Miquela was handcuffed. The hope again was that she would calm however, that did not happen so she was taken to the psych unit on a "pink sheet hold". That means that she was a danger to herself and to others. I was in my yearly review for work as all of this happened. I came out to my desk to a message of all of the drama. I'm grateful to work where I do -- I looked at my co - supes and said I have to go. By the time I go there Miquela was in a obs room. She was slightly calmed. Her pro parent was giving them all of her med info, history of the past few weeks and I filled in the history. The psych unit is very efficent they had her to the floor quickly. However, she did not want to walk into the unit. Miquela stood by the door and wouldn't move. Eventually they had me come in and help get her settled with baseline vital signs, etc. We then met with one of the psych nurses to go over her history. They told us that we could visit and gave us the code number.

The pro parent needed to give her medicaid card etc for admissions so I stood in the lobby and waited with her stuff. Her phone rang and it was the agency. All I can say is I know for sure with Miquela I am done working with this agency. Her two workers have been unhelpful, disrespectful and can't communicate to save their lives. Her DSPD worker is awesome! On our way out I wanted to stop by the doc's office to make sure she was okay. We met for about half an hour and it was the doc's rec that Miquela be moved to a group home as she is a danger to herself and others. The doc had a reccomendation of another agency and I made a call to someone I know there to start the ball rolling to look for a home that might work.

I then phoned her DSPD worker -- who was glad I'd called as she was really confused because what the doc was saying wasn't matching up with what the agency had said. I told her how I had been asking for play therapy and a behavior plan since November, how the agency worker wouldn't return calls, and about Miquela's outbursts. The DSPD worker was shocked. I told her that we did need to move her and that I was concerned as the agency was upset that Miquela was in the unit. 

At this point all is on hold until we can find Miquela a group home -- It is hard to move your small/big child into one but it is time.  Stay tuned for updates. (This was written in Feb and I thought I had posted it). 

New Year New Goals

Yes, yes I know I truly SUCK!!! Life has a way of getting away from me which means I don't post. I think about posting and it just doesn't happen. At this point I have so much to catch up on as we have had birthdays, heart cath/biopsy and clinic visits, Thanksgiving, Christmas and New Years. I promise a great update very soon.

A new DOG

We also have a new dog -- Annabelle. She showed up on our front porch on Tuesday while I was in NYC. When I got home around 1 am Thursday she was still there. Trying to juggle my suitcase, computer, purse and the yummy treats I bought in the city was too much and she got into the house. At this point I could tell she had recently had puppies. She was crying and running around my house like a nut case. She spotted Matilda our little cat - not Merlin the big cat and began to cry and lick her -- on lick five or so she stopped looked at her again and threw herself down onto the couch. Guess the cat was not one of her long lost puppies. We got her out of the house and back onto the porch -- where she stayed all night.

I called the dog police to come and get her the next day. When I came home from work she was gone -- I was surprised because lets face it civil servants don't generally do what they are asked. At 630 my doorbell ding donged (don't you love my lingo) two crazy women and five teenage girls were on my porch with the dog now on a rope -- "Lady your dog was out on the highway". "This is not my dog." "Yes it is she came right to your house and laid down on the mat." "She is NOT my dog -- this is my dog." I picked little Mr. Buddy up to show her -- The first lady calls 911 the second lady ties the dog to my railing. They leave. My next thought is CRAP what do I do now -- big dog tied to the porch, homecare nurse on her way -- and dinner burning. First things first -- after all she was tied to the porch so it was not like she was going anywhere.

Sydney's nurse gets there about 45 minutes later -- this is a new nurse not our regular one for the past 6 years. Nurse Tami gets out of her car with all of her crap -- looks at the dog then looks at me -- "That's not your dog -- who's is it? She's BIG!!". I tell her the sorted tale -- she starts to prep Sydney's port for the blood draw -- I look out the window as the police pull up in front. I shake my head and tell the nurse I'll be back and step over the dog to talk to the officer on my grass. He lets me know that animal control is closed -- I tell him yes, that is what I tried to explain to the (crazy) women who phoned. He tells me that they sent him since he breeds dogs -- great an expert. He tries to pet the dog -- she growls and stands up. He looks at her underside and backside and lets me know "she has recently given birth". You should be proud at this point because I didn't say -- "gee is that why she is lactating?". He asks if he can leave her here for the night and he swore that the animal police would pick her up first thing in the morning. I told him that would be fine. He asks if I will feed her -- I told him of course. He says goodnight and heads back to his patrol car. Just as an FYI -- dog does not like canned dog food -- what dog doesn't like that? Also, it was cold out -- she was freezing. Maggie put Buddy's basket out there -- Buddy is a shitzu poodle mix -- the basket is small -- Dog is large and squishes into it. Dog is still cold so I cover her with two blankets -- she sleeps all night.

The next morning Charles says "maybe we should just keep her and try to find her people". WTH???? I told him no -- after much talking (more me listening) I agree to leave the animal people a note. In the note I told them what we knew about said dog -- good with cats, kids, and women. She doesn't like men or wet dog food. I also put in there (against my will) that if her people do not claim her that we will re-evaluate adopting her. Every hour my neighbor text's me that the dog is still there -- the texts end at noon. I feel relief and guilt. The animal police must have come and picked her up.

Five o'clock rolls around I'm cleaning up a few lose ends at work -- my cell rings it is Charles. Charles asks if I'll pick the baby(Zachary) up from the sitter (side note -- at what age is he no longer a baby??). I said I had planned on it -- why would today be any different than any other day??? It is oddly quiet and I ask Charles where he is -- at home with Annabelle -- I ask who Annabelle is -- The dog from the porch. I ask why she in the house the answer of course is that the dog police did not come and get her -- Annabelle been in the house since 3 -- she is doing well. WTH??? Charles tells me that is taking her to PetsMart to see if she has a chip and to pick up some dry dog food. I hang up the phone and think WTH??

I arrive home to hear the joyful news from our children --No chip -- No ads for lost pets -- so she is still with us. I guess she picked the right house to claim as her own --

Welcome to our world Annabelle!

18 years Tomorrow

Who knew 18 years ago tomorrow we'd have 7 kids, 2 cats, 1 dog, be on our second house and have made so much history? Back then I was just worried about making it down the aisle and surviving the rehearsal dinner. One thing that hasn't changes is that I love you Charles -- always and forever --

Here's to the next 18!

Caitlin's 16th Birthday

I can't believe that my Caiti Caitlin is 16. My oh my how you have grown! I remember when she came to us at 9.5 months old and only 12 pounds. She was so little and sweet... She is still sweet just not little.

Caitlin has a wonderful sense of humor and a great sense of sarcasm -- Yes, I do wonder where she gets that from. Caitlin is tender and loving to those around here -- she bursts into tears when she is frustrated and loves LOUD music. Cait will play Just Dance on the Wii for hours and hours if you let her. She is easy going and easy to live with -- for her to blow her top it takes a lot.

For her birthday she wanted to go out to dinner -- we let her pick and we ended up at Wingers. She had never been there so we found it odd that she would ask to go there. She also wanted new clothes for school -- a wish easily granted. All in all it was a great day!

Two Boys and a Momma

This year taking a summer vacation just has not been possible. The girls did have camp with the church the first full week of August. I decided to take three days off from work – the first three days off I have taken in ages. Side note – I also had to take PTO as I was at the stage of not earning anymore until I used some. The girls left on Monday for camp so I worked Monday and Tuesday and took the balance of the week off.

On Wednesday we had a “sleep in” day. Poor Charles had to leave for work at 0600 while the boys and I slept until almost 1000. We got up, showered, dressed and picked up McDonalds from lunch. The boys and I watched a movie while I cleaned out some kitchen cupboards. I even made real dinner. That is one of the hardest parts about being a working wife/mother, my time to cook / bake is so limited. We had snuggle time as a family and watched a bed movie.

Thursday we rode the Trax train for the first time ever. Trax just opened a line from Daybreak to Downtown the week before. Zachary and Jonathan were thrilled. We got on the train just two blocks from our house and got off by Temple Square. We had lunch at The Blue Lemon. It was nice to just be able to take time to hang out and take care of my boys. We went to Temple Square next and the boys played in some of the fountains, and watched the wedding parties. Zachary even told one bride “I love your fat white dress”. Not quite what she wanted to hear I’m sure but he was sincere. We went over to the Church History Library. My patriarchal blessing was MIA and I wanted a copy. We then headed back to Temple Square and explored the north visitors center. They have some great exhibits in the basement right now. We spent a couple of hours there. Next we found some cookies and drinks and headed for the Trax station to come home. By this time the boys were really tired. We rode the train home and picked up snowies. We even had time to pick fresh beans from our garden for dinner.

Friday morning we were going to go to story time at the library – however the girls arrived home at 1000. There was great drama with that but all is well the ends well. I keep having to remind myself that the camp leaders were well intentioned and that Sydney is / was fine by the next afternoon. Again I was able to make dinner and do laundry with my family. Everyone was in bed by 930 it was sooo nice.

On Saturday we went to dinner with one of Charles’ college roommates and his wife. We had a great visit and we were able to share with them our journey through our different types of adoption. It was nice to be with grown ups and of course our ever faithful Wennie watched the kiddos.

On Sunday Zachary’s class was missing a teacher so I taught primary for the first time in eleven years. Most of the kids were worried because I was not “their teacher”. However all’s well that ends well.