A Life Donated: Part 7

August 15, 2017 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She was initially found to be ineligible, but that would change thanks to a heart failure/transplant program that chose to take a chance on hope and optimism.

Much as we owe her life to the sacrifice made by her birth family in letting her go, we also owe it to the incredible, selfless act of organ donation made by a family in the midst of the incomprehensible loss of their child.

This series is a retrospective of the weeks leading up to Rini’s transplant which took place on November 13, 2013, and it is my hope that it will help to bring awareness to the importance of registering to be an organ and tissue donor.

We all have the power to be someone else’s miracle.

Donate Life!


From October 11th, 2016

On this day three years ago, I was packing for the following day’s trip back to the hospital. I was so excited to see my beautiful girl again, and so consumed with guilt for having to leave our other children. 

Our friends had referred us to a photographer who had generously offered to come to the hospital in two days to take our family portrait. The thought of Rini dying and not having been in a photograph with our family was an insult to my heart and soul.

In my luggage, I had carefully placed the dress, shoes, and headband that I had chosen. Oh how I had obsessed over that outfit! All of the seemingly mundane tasks that we take for granted in our day-to-day parenting – preparing a meal for our children, bathing them, selecting their clothes – are so very precious.

I feel fortunate that I understand and appreciate that now more than ever.

We began looking forward to taking Rini out of the confines of her hospital room after her doctors had given their consent for us to go to different areas of the hospital, including an outdoor patio, for the session. But that plan would change.

In just 48 hours, Rini’s heart would enter its twilight and begin communicating to us just how tired it was.

From October 12th, 2016

“Trust in the Lord with all your heart and lean not on your own understanding.”

On this day three years ago, Eric, our children and my parents drove up to the hospital for our family portrait session. What a mixture of hope, sadness, beauty, and grief that day was. 

Early that rainy Saturday morning, Rini’s cardiology team and nurses told us that they were not going to permit her to leave her room after all, even on respiratory support and with nursing care. That’s all they said. Looking back on so many interactions with our teams, both in Portland and later at Seattle, I can now clearly hear the words that were not spoken. 

The photographers set up and for the next twenty minutes we sat together as a family and captured precious moments. It was a joyful time, with the kids playfully interacting, smiling a lot, and enjoying themselves.

It was another of those times where I felt like God was giving us a big hug. I was so grateful to experience that togetherness without 
the typical stress and sibling squabbling that seemed to always be a part of family portrait days of years past.

The only child who was not smiling that day was Rini, and I remember that sick, sinking feeling in the pit of my stomach masked by my smile. I knew something had changed and after the first twenty minutes, it became clear to all of us that Rini was struggling.

We put her on her bed and reattached her pulse oximeter and telemetry, and saw that her 02 saturation was dropping and she was tachycardic. Her nurse was able to stabilize her after some time, and the cardiologist was paged.

In just 72 hours, we would have our first conversation ever regarding our resuscitation wishes for our child.

From October 14th, 2016

On this day three years ago, Dr. Carlson came into Rini’s room in the late morning and handed me a notebook that would change everything. The cover read, “Living With a Heart Transplant” and it was from Seattle Children’s Hospital.

Did that mean they had accepted her for transplant evaluation?!

I remember feeling like I was in a state of suspended animation. Time seemed to stand still.

Seattle had notified Rini’s team that they would accept her for evaluation if her prealbumin reached 18 mg/dL, and the hope was that she would be in a position to transfer there on the 23rd. They wanted us to read through the book to gain a thorough understanding of the process of evaluation, listing, transplant and its lifelong aftercare, in order to make a determination as to whether this course was truly what we wished to pursue for Rini.

As would be reiterated to us more times that we could count, transplant is not a cure. It is “trading one chronic condition for another”. Its goal is to extend life and improve its quality.

It is a gift.

It is a responsibility.

Some families ultimately decide against it for their child for various reasons. But for us it was the only offering we could make to her. Hope was the only gift we could bestow upon our child. We couldn’t see any other way than to continue on the path we were on, to try for her sake, to endure, to trust in God that there was a reason for it all.

To this day we are grateful to all of the physicians and other medical professionals involved in Rini’s care for supplying us with unbiased information and not burdening us with negativity or unsolicited opinions.

Eric and I did our research. We understood the odds. And not for one minute were we unaware of the responsibility of that choice, despite what some might have thought. It’s easy to take the moral high ground and declare, “I would never!” when you are parenting healthy children.

In an unbroken world, no parent would ever be put in the position to have to choose between witnessing their child suffer and die or watching their child suffer in a battle for their life. Opinions rooted in concrete are often the privilege of those on the sidelines.

I was cautiously optimistic, yet at the same time in a state of panic. Rini wasn’t metabolically stable yet, and her declining state had thrown her body into the beginning stages of chaos.

Yes, she was already in chaos. But I have to be very careful with the words I choose and the way in which I quantify, as we would soon learn how many layers there are to “sick” and to “dying”. I had absolutely no appreciation of that at the time.

A friend came to visit Rini and me the very next day and she said, “I thought she would look different, like with tubes all over.” That same friend would visit us a few weeks later in Seattle, when Rini was on life support, intubated and with ECMO cannulas bringing her entire body’s volume of blood out of her and back in, in a relentless dance of agony and hope. There is dying, and then there is dying. 

Rini had been gaining a few grams per day, but was now having diarrhea along with vomiting. Labs were being checked every morning at 5am, and sometimes twice per day. We learned that Seattle was now steering the ship and guiding Rini’s team on her care, and all new support would need to be approved in order to make sure that nothing was done that could adversely affect her transplant eligibility.

For instance, some of the cardiologists had suggested occluding Rini’s PDA (patent ductus arteriosis) in the cath lab within the next day or two in order to increase her oxygen saturation but Seattle vetoed that. In the blur of all that was happening, I didn’t understand why but the reason would be made very clear on November 7th, and would open our eyes to just how vital it was to have an experienced heart failure/transplant team in charge of a child like her.

Although Dr. Carlson had sat down with us a couple of weeks prior and walked us through the physiological process of death by heart failure, watching this disease assault our child was something we could never have prepared ourselves for. Neither was being in a situation where our daughter’s chance at life would hinge on the decisions made by strangers.

We would be taken down a path where our struggle for control would be beaten out of us day by day, and as agonizing as it would be, it was for our own good.

“Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” 2 Corinthians 12:8-9


To read the other posts in this series, click here.


Waiting to be Chosen: Milla

August 14, 2017 0 Comments

Meet Milla, one of the newest kids at Bethel! Milla came from Maria’s Big House of Hope, but she was transferred to New Hope for foster care but attends Bethel’s preschool during the day.

Milla is a very engaged and happy little girl. She is still nervous in her new environment, but she calms down if someone pays attention to her. She has some delays in her gross motor skills, but Bethel thinks that’s just because she’s still nervous to get around. Though her language is delayed as well, she can count to ten and make some animal sounds, so the teachers know that she can talk and are building on what she already knows. Every morning the kids sing a children’s song about animals, and she can answer the question, “What does the dog/cat say?” Bethel staff are thrilled to have this sweet girl in their program.

Milla is paper ready for adoption and we would love to see her in a family! With so many special organizations who love this girl, we hope she won’t be waiting long! You can email Bethel for more information. Milla is currently listed with CCAI!

Organized Chaos: Managing Adoption Paperwork

August 13, 2017 3 Comments

Call me weird but there is something about adoption paperwork that I actually enjoy. My personality thrives on checklists and deadlines. I love completing a task and knowing that the work is bringing me one step closer to my son. Paperwork is a tangible way to show that I am making progress in our adoption.

However, keeping all of that paperwork under control is a whole other ballgame. Even the most administrative type A personalities have a hard time taming and organizing it.

Here are some tools I have found that can help you not only survive but also thrive in your paperwork pregnancy.

1. A printer/copy machine/scanner.

You do not ever want to let a piece of paperwork leave your house without copying or scanning it. Adoption paperwork is a part time job and you put too much work into gathering and filling out the documents to let them get lost in the mail.

2. A ton of paper for your printer as well as an extra set of printer ink.

When you have to print or copy an item quickly and send it in right away, it is not the time to realize your printer is out of ink and make a late night sprint to the store (not that I have done this or anything . . .)

3. Basic supplies like a stapler and a three hole punch.

Office supplies are an opportunity to get creative. If fun colored markers, patterned folders, post it notes with pretty designs, colored paper clips, and Washi tape are your jam, then go for it. You are going to be looking at these supplies A LOT so pretty designs can help keep you motivated with tackling the mound of adoption paperwork.

4. A system to keep all of your papers in one place.

There are several schools of thought on this. Some people use an abundance of magazine holders and others use a file box with hanging folders. My favorite system is a three inch binder with color coded tabs and a plethora of page protectors for important items you can’t hole punch.

No matter which system you use, you will want to have several categories so you don’t end up with a stack of jumbled papers.

Here are some suggestions for your tabs:

Agency information (It is helpful in this section to print off the adoption timeline/checklist from your agency so you can check off and date completed items as you go. This section will also include agency contact information and policies)

Agency application (This section includes any forms needed to apply to your agency)

Home study (Any paperwork needed such as tax forms, bills, financial statements, copies of licenses, and online class certificates)

Completed home study (This is the stack of papers prepared by your social worker)

Dossier (Any and all papers to prepare for this step)

Grant application (Forms and information needed for grants)

LOI (In this section you will want to have copies of your Letter of Intent forms as well as a printed copy of your child’s entire file. You will refer to the file many times over the journey so it is helpful to have this printed out and on hand)

LOA (Letter of Approval- one of the most prized documents)

800 (Forms to fill out for this section of the adoption journey)

Travel (I like to print out posts and tips from others’ blogs to put in this section such as packing lists, restaurant suggestions in the city we will travel to, and any travel information from our agency)

Financial (A record of all of the money you spend from agency fees to fingerprints and even postage to send documents. I have a separate piece of paper in this section that is entitled “God’s provision” and on that sheet I record all the ways God has enabled us to pay for this adoption such as lemonade stands, yard sales, consignment sales, and people’s donations. This is also a great place to keep receipts)

Post adoption (This section is often forgotten but is very important. It includes papers such as re-adoption information, Certificate of Citizenship, and post adoption tips from blogs)

Once you have a picture of your child, it is so rewarding to put that in the very front of your notebook to remind you that all of the paperwork will be worth it in the end!

In the folders of your binder it is nice to keep a stack of thank you notes, envelopes, and stamps close by to thank those who give to your adoption.

You also many want to purchase a simple journal to place in your binder to jot down notes throughout the process. Perhaps you need to write down something from your conversation with your social worker or maybe notes about a doctor’s assessment of a file. It is also wonderful to record a Bible verse or a word of encouragement you received from a friend. It is extremely helpful to keep all of these notes in one place to reference later.

Staying organized is key. When you need a document, you don’t want to dig through a jumbled pile of papers because that only adds stress to an already overwhelming process. It is vital to be able to find a particular document at any given time. Plus as your binder grows fuller with all of your completed documents it is symbolic of a mother’s womb growing fuller with each month.

With a little organization, your binder (and your heart) will be prepared for your upcoming due date!

Waiting to be Chosen: Landon

August 12, 2017 0 Comments

Landon moved to Bethel China in December of 2016, and what a great Christmas present he was! He was born in July of 2013 and his special need is vision loss. Landon is 3 years old and he loves to play and loves to receive attention from adults. He likes to jump on the trampoline, …Read More

Urgently Waiting: Victor

August 11, 2017 0 Comments

Victor is a nine year old boy who came to Bethel in the fall of 2016. It was clear upon arrival that Victor had difficult start to life and that he would have many obstacles to overcome. His transition was very hard on him and our staff, but with a lot of love, patience, and …Read More

Past Contributor Throwback: Kelley

August 10, 2017 0 Comments

Since our inception in 2008, No Hands But Ours has relied on the shared stories of regular moms and dads as our foundational way to encourage, inform and support those in the adoption world – in any phase of the adoption process. And since our first post, the list of regular contributors has changed, well… …Read More

Attachment Q & A: Connecting With The Child Who’d Rather Not

August 9, 2017 0 Comments

Attachment. Not much more could not be packed into one single word, especially in the adoption world. We spent all of July focusing on this most-important topic and decided to continue into August – but with a bit of a twist. This month we’ll be answering your attachment questions. Because we all have them – …Read More

On Attachment…

August 8, 2017 1 Comments

Dear child, When I watch you react, reject, rage, hoard, lie, shut down, numb, and scream – I will remember. I will remember that this is not what separates us, but I will recall that this is common ground. This broken response to unconditional love. And I will not expect you to rebuild a scaffolding …Read More

Living with HIV: From the Parents

August 7, 2017 0 Comments

As we see more and more HIV+ children become available for international adoption, we thought that it would be beneficial to hear first hand experience on parenting this need. So we asked prospective adoptive parents what they really wanted to know about having a child with HIV; then posed those questions to both adoptive parents …Read More

Attachment Q & A: Freefall

August 5, 2017 0 Comments

Attachment. Not much more could not be packed into one single word, especially in the adoption world. We spent all of July focusing on this most-important topic and decided to continue into August – but with a bit of a twist. This month we’ll be answering your attachment questions. Because we all have them – …Read More

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