Category Archives: Special Needs Adoption

Whom the Lord Calls

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Valentine’s weekend represents a lot of milestones for our family. Two days ago, we celebrated the seven years since we took Patrick to the temple to be sealed to our family. Three years ago, we took Patrick to Nebraska to have him evaluated for a transplant there. It meant moving to a better program, but leaving a lot of comfort behind. A completely foreign city, a huge hospital, and no one we knew. And then one year ago, we arrived home with Patrick after he’d received his transplant, evidence of a miraculous recovery.

And then yesterday we added one more. Yesterday, Brian (also known as Howie, if you are ever confused by my mixing names in this blog post) was called to be a counselor in our bishopric.

A bit of explanation for those less familiar with the Church of Jesus Christ of Latter-Day Saints. The “Mormon” church has a lay ministry. That means that we don’t have professional clergy. At all. Some full-time. But none are formally trained. And none are paid. Instead, we are all trained as a part of “bringing up” in the church and we all take turns. Every 5 or more years, a new bishop is called. His service is voluntarily and in addition to his regular job, but no less real in its demands. He is a pastor to his congregation. Leader, comforter, judge, and friend. And he is helped in his work by two counselors. Brian was just made a counselor. (And in order to serve in that assignment he was also ordained a high priest.)

But this blog isn’t about Brian or about bishoprics. It’s about our family and our journey together. And so I’m going to share some reflections I’ve had as we prepared for this new assignment. (See, even though the news was only announced yesterday, we’ve known for a few weeks and I’ve had some time to think.)

A phrase came to my mind a few days ago. “Whom the Lord calls, He qualifies.”

And so I’ve been thinking about the calling I’ve been pursuing for the past seven and a half years. My calling as Patrick’s mother.

Seven and a half years ago,  I took that a phone call, my life changed. But I don’t think you could say that the Emily who answered that call about a boy who needed a family was qualified to be a special needs mom, a short gut mom, a TPN mom, a transplant mom, an autism and ADHD mom, a feeding therapy mom, a food allergy mom. I had tried to prepare to be a mother. I had often wondered if I hadn’t been given the chance yet because I wasn’t really prepared to even be a mother. (I wasn’t so very wise then, was I?)

Patrick on His sealing day.

Patrick on His sealing day.

Some people say that special children are only given to special parents. And I don’t think that is true. At all. I’ve watched hundreds of moms in the support group I run learn about their children’s diagnosis and realize that they don’t have even the beginning knowledge required to do what is required of them.

I certainly wasn’t equipped. I was impatient. I was just learning how to handle my anxiety. I had panic attacks when schedules changed. (Umm, drop everything and run to the ER? What?) I was absolutely phobic of doctors and hospitals and especially surgical procedures.

When I took Patrick for his transplant evaluation, I had learned a lot and was a seasoned medical mom. But I couldn’t have imagined what that experience would be like. The pain he’d be in. The effect his medications would have on his moods. The trauma we’d both have to learn to live with. And though I knew being far from home and without my husband would be hard, I couldn’t have prepared for it.

Patrick and his dad in x-ray at his transplant evaluation

Patrick and his dad in x-ray at his transplant evaluation

When we brought a “new” Patrick home, I wasn’t prepared for the growing and changing that would happen this year. The sheer weight of trying to learn a whole new way of life. A new gut in many ways opened doors to a new him and needed a new kind of mom.

I wasn’t qualified for any of these things when I started them. But I was willing. I was teachable. And I trusted that the call came from the Lord.

I have received a lot of on-the-job training. I have had solutions to problems come to my mind with such clarity and perfection that I know they can only have come from a knowing Heavenly Father through the Holy Ghost. I have shed lots of tears when I didn’t feel I was measuring up. And then I’ve gotten up and kept trying.

I have learned to rely heavily on friends and family and neighbors, on experts willing to take the time to teach me, on other parents who started out as strangers but became friends.

And I’ve learned that truly, whom the Lord calls, He qualifies.

He does it. Through His grace. If we let Him.

Special children aren’t given to special people. Ordinary people become parents to special children all the time. Ordinary people are faced with all kinds of devastating trials every day. Ordinary people step up and do impossible things every day.

There is a saying that floats around a lot. “The Lord won’t give you more than you can handle.”  That isn’t quite right. Here’s what the scriptures really say:

There has no temptation taken you but such as is common to man: but God is faithful who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.  1 Corinthians 10: 13

In other words, “The Lord won’t give you more than you can handle without also giving you a way to handle it.” He uses trials to make us better. To make us more like him. He takes ordinary, willing people and makes them into special people. Or, in simpler words, “Whom the Lord calls, he qualifies.”

P.S. Don’t take this as bragging. I still consider myself far more ordinary than special. But I digress…

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Here we are. Another Valentine’s weekend. Another big change. I don’t know quite yet how Patrick and I are going to fare with Brian even busier. I’m sure sacrament meetings are about to be really interesting. And bedtimes.

I am sure that my humble, determined-to-serve husband is feeling a bit overwhelmed by this new calling. I’m also certain that he will do a marvelous job and that the people of our church are going to be really blessed by having him on their side.

And I’m going to do my best to keep up. That’s what I’ve been doing the whole time I’ve known him.

Brian loves to go for walks. When we were newlyweds and lived downtown, he would decide to walk to the city center. That wasn’t a short walk. And with his longer stride, I had to take an awful lot of steps to keep up with his pace. He has taught me quite literally what it means to “lengthen your stride.”

That’s what it is like having him for a best friend and husband. He’s always challenged me to quicken my step, lengthen my stride, and do a little better.

I’m ordinary. And short-legged. But I’m trying.

And whom the Lord calls….

Adoption memories

We had Patrick’s g-tube study done. (Great results! Nothing wrong. Just a slightly upward angle that makes positioning the tube tricky.) As part of the history, they asked when the gastrostomy (g-tube hole) was created and I realized last night that I could have answered “exactly two years ago.”

Why do I remember that? Well, because exactly two years ago yesterday, the court officially named us as Patrick’s legal guardians. It was the best birthday present I’ve ever gotten.

A friend of mine has been doing something special this month on her blog. Because it’s national adoption awareness month, she’s been posting daily adoption related posts. She invited me to be a guest blogger and, by coincidence, will be running my post today… a very significant 2 year adoption anniversary for us.

So, I thought I’d share with you what I wrote for her. Here goes:

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Ours is not a typical adoption story, because Patrick is not a typical little boy. His life was meant to be something different, something miraculous, and so it required that it start in a very different and miraculous way.

But my part of the story starts the way a lot of others do. We wanted to have children. When that didn’t happen easily, we involved doctors. For years, we went through the ups and downs of charting and temperature taking, tests and medications. Finally, after several years and a minor surgery, our doctor sat us down for “the talk.” He explained that there were several causes of my infertility. The cards were, essentially, stacked against us. He still felt it very possible that we could have children, but only with major medical intervention. We had some big choices to make.

We talked about it and we prayed about it. And then, that Sunday, as we sat in church, we received a clear answer that it was time for us to stop medical treatments. Our child would come to us through adoption.

With a path finally before us, we moved forward quickly. I’ve never felt so driven to do anything before in my life. In under a month, we completed the application process, training classes, and were mostly done with our home study.

During our home visit, we had a conversation with our case worker that would play a major part in bringing Patrick into our family. She’d looked at our “preferences checklist” and noted that we seemed more open than most to adopting a child with special needs. We explained that we felt that adoption was a faith process. We believe that Heavenly Father puts families together. We knew we’d never turn away a child born to us with medical problems. So, if God was in charge of adoptions, too, then why would we limit His options? We knew Heavenly Father would help us find our child and that, if the child really belonged in our family, race and health wouldn’t stand in the way.

We decided to adopt in June. Our application was approved in September and we hunkered down for a nice long wait. We figured two years, at the least, was the average we’d heard. And still, by the end of October it felt like far too long. My heart ached for a child it knew was missing.

Then, on a very snowy morning the first week of November, my phone rang. It was my case worker. She started out by saying, “There was a little boy born on Halloween in Michigan.” My heart skipped a beat. I grabbed a pen and a piece of paper and started scribbling notes. She told me he was Korean. And then, she went on to tell me that he’d had a birth defect. His intestines had developed on the outside of his abdomen. The doctors were saying he had a life expectancy of 1 to 2 years. They needed to find an adoptive home quickly because doctors wanted to discharge him from the hospital. All she could tell me about his family that his birth mother wanted him to be able to go to the temple to be sealed to a family.

She said she’d send an e-mail with more information and a picture. She encouraged me to talk to Brian and decide if we’d like to be among those families considered to adopt this little boy, and then to call her and let her know.

As soon as I gathered myself, I called Brian. But he wasn’t at his desk. Meanwhile, two e-mails arrived. One was a short paragraph from the baby’s caseworker in Michigan explaining his medical needs and the unconventional and hurried search for parents. In the other were two photographs of a sweet little Korean boy with great big eyes and an IV in his head.

Since Brian wasn’t at his desk, I called the insurance company to find out if this we even had coverage to pay for this kind of medical problem.

That’s how Brian first found out about the offer. While I was on hold with the insurance company, he called back on my cell phone, so he heard me finish the conversation about “preexisting conditions” and “adoption”.

I gave Brian the information and, after a quick moment of thought, he said he’d come right home.

We had a prayer together, then went to the temple – the perfect setting to make decisions about life and death and eternity.

I knew that families are eternal. I knew that mortality is not the end of life. And yet, I was filled with grief. It was as if I’d just been told I was carrying a child with a terminal illness, but he wasn’t even mine yet. And I was scared. I didn’t know if I was ready to leave the life I knew then.. abandon it all, and become mom to a child who would need so much help, and who had such an uncertain future.

Still, when Brian turned to me and said, “I think we should pursue this,” my heart leapt with joy.

So, we called our caseworker and gave her a list of questions we had. And then we went to visit our parents. We felt we should tell them about the offer, because we knew that whatever happened, we were never going to be the same. And we both wanted father’s blessings. We showed them the little boy with the angel eyes and explained that we didn’t know if he was ours.. But from that moment, all of our families were praying for a little boy whom the e-mail called “Patrick.”

That was Wednesday. Thursday, I sent a copy of our profile. Friday afternoon, as I on my lunch break with Brian, our case worker called my cell phone. The birth family had seen our profile and had chosen us to adopt their baby.

Now, we had a choice to make. Because we’d been selected, we could finally start filling in the gaps in the medical information we were getting. And boy, where there gaps! We called the baby’s caseworker, who referred us to the hospital social worker. Finally, we decided we needed to talk to doctors, and we needed to do it face to face.

I called my mom and told her to take my credit card and buy airplane tickets. Then, I went back to work, explained what had happened, and asked for a leave of absence. After that, we went to the adoption agency where we signed pre-placement paperwork required for us see the baby in the hospital.

Friday night, we tried to get ready. We booked a long-term stay hotel room. We faxed legal documents to Michigan. We make a shopping list of nursery items. And we tried to pack.

I packed my bags that night not knowing what exactly I was packing for. We still didn’t know enough to say if we could take care of this baby. We didn’t know if or when he’d be discharged. We didn’t know how long it would take before we’d be given permission to leave the state again.

And yet, Saturday morning as I sat on a plane to Detroit, 10 rows ahead of my husband, I felt a quiet, happy calm. If nothing else, I knew it would be ok.

We met Patrick, his family, and his doctor Saturday night. It wasn’t what we expected. Due to unforeseen problems, things were tense at the hospital when we arrived. We felt like we knew nothing at all about his condition when we heard the doctor’s account. His case was much more severe than we’d understood, but the immediate prognosis was better.

At last, they led us to his room. My first impression was of how small he was. He was SO tiny! Just a little ball with wires and tubes attached. Without them, you’d have never guessed there was anything wrong.

They let me hold him while we talked. He felt so small and fragile.

I thought that the moment I met my baby, or the moment I held him, that I’d know he was mine. But that isn’t what happened for me. There were too many questions, still and I’d have to wait for that confirmation.

Sunday, we arranged to spend the day with Patrick. The nurses were so kind to let us change his diapers and help with other aspects of his care. I sat for hours singing him lullabies and watching monitors and letting him sleep.

When we arrived, the nurses warned us that he had a reputation as a very irritable little boy. There was even a sign on his door warning not to wake him. He was famous for screaming hysterically if his sleep was interrupted. But that’s not the baby I met. He was just a sweet, tiny little boy who wanted to be held.

I remember singing to him: “I am a child of God, and he has sent me here. Has given me an earthly home with parents kind and dear.” And my voice choked on the words because I knew that right at that moment, Patrick didn’t have that. I couldn’t imagine how any little boy could go through all he’d need to go through alone.

That night, as we looked at pictures from the day, I came across one that showed just his face with a white background. I knew, when I saw that picture, that I loved him.. and I wanted to keep him.

Monday morning, we held a “family conference.” It was a business day so we finally had been able to confirm that there were doctors to take care of him at our hospital at home. Our insurance confirmed that he’d be covered. Brian needed to hop on a plane to go back to work. (He was running a conference that week.) So, knowing we had the resources to provide for his physical needs, we asked Patrick if he’d like to be a part of our family. I swear, he looked up at Brian and smiled.

The case worker rushed to the hospital and by 1, we’d signed paperwork, and I was on my way to the airport with my husband. I was staying behind to start a whole new life.

The next few weeks in Michigan are among the sweetest of my life. With nothing else to do but hold my new baby and learn to care for him, I virtually lived in the NICU. My mom came for a week and shared with me in Patrick’s first feeding, first bath, and first time wearing real clothes. This time was also some of the hardest I’d experienced as I received a trial by fire as a mom of a child with major health problems. Patrick had his second surgery the day Brian flew back to be with us.

Two weeks after we signed papers, on my birthday, the birth parents appeared in court, and we were named as Patrick’s legal guardians. A week later, we had permission to bring him home. At 4 a.m. Thanksgiving day, Patrick and I arrived at Primary Children’s Hospital by air ambulance. He’d spend the next few weeks there as the doctors here got to know him and made arrangements for us to take care of him at home.

Because of his medical needs, the courts granted an early finalization of his adoption and we were able to take Patrick to the temple to be sealed as a forever family in February when he was just 4 months old.

Patrick just turned 2. He is an active, happy toddler who loves cars and music and Elmo. He is a living miracle! Patrick’s birth defect came with a rare complication. As a result, at birth he was missing over 95% of his small intestine. Without intestine, he doesn’t get nutrition by eating. In fact, eating large amounts puts him at risk for dehydration and bowel obstruction. Instead, he is entirely dependent on a form of IV nutrition called TPN. He has a permanent IV tunneled through his chest, into a vein in his chest or neck that runs to his heart.

The TPN leads to complications like infection and liver disease. In his short 2 years of life he has already struggled with both. Patrick’s doctors warned us before we adopted him that we’d become such regulars in the E.R. that we’d be on a first name basis with the staff. We soon found that to be true not just for the E.R. staff, but also the IV team, the infectious disease team, the PICU team, most of the residents, several of the medical students, and the entire gastroenterology department.

At 9 months old, as a result of infection, Patrick’s heart stopped. The fact that he is alive now is nothing short of a miracle. No doctor who hears his story and then meets him can help but confess that he has beaten the odds in countless ways.

Patrick will eventually need an intestinal transplant. He is already running out of places to put new IV’s and each new infection makes him a little more fragile.

Since they don’t do intestinal transplants where we live, we have chosen to have Patrick listed at Seattle Children’s Hospital. Patrick has been on the waiting list since April of 2009. He is status 1A and will have his transplant is soon as a donor match is found.

People try to tell us sometimes what a tremendous thing we did in adopting Patrick. We don’t really feel it’s something we can take credit for. As we told our caseworker when this all started, Heavenly Father puts families together. He knew Patrick needed us. And what’s more, He knew we needed Patrick.

Raising Patrick has taught us more about life than any other experience. We have learned to rely entirely on the Lord. We have learned to live each moment to it’s fullest. We have learned to lean on one another when things are hard and we to trust in hands of friends and strangers when we felt too weak to stand on our own. And we have learned to love like we didn’t know it was possible to love.

Through Grandma’s eyes

I have so far resisted the impulse to write and to let Emily handle all the blogging. But after reading her most recent post about the beginning of this journey, I feel like adding some of my own thoughts.

It is difficult for a mother of seven to see her daughters struggle with infertility. I always have a prayer in my heart for them to be able to experience the joy that I feel as a mother and grandmother.

When Emily and Brian came to us with the story of the little baby born in Michigan that might not have a long life, I had such mixed feelings. I wanted them to have this little guy in their lives, but didn’t want them to have to suffer any more sorrow. There were so many unknowns. I can’t tell you why I fell so instantly in love with that little 2 x 2 inch digital image, but I did, and hoped that things would work out.

I don’t want to jump ahead too much from Emily’s story…but the best part of November last year for me was that I got to go to Michigan and meet Patrick myself. Brian had to come back to Utah and complete a project at work. Thankfully, we have access to Delta Buddy passes and I was able to fly out and stay with Emily for the week he was gone.

She picked me up at the airport and I don’t remember if we went to the hotel first, but we were at the hospital in no time. We had to check in at a secure desk and then off to wash. This was an event in and of itself. Roll up your sleeves, take off your jewelry, look at the clock and then begin to scrub and not just for a few seconds, it took several minutes.

Then through a maze of sorts (took me a couple of days to figure it all out) and we were in Patrick’s room. The lights were dim and there he was…big brown eyes and lots and lots of dark hair. He was so tiny. Just over 5 lbs. His tiny head fit easily into just the palm of my hand. Holding him was no effort at all, except that he had leads and tubes that connected him to life-saving and monitoring equipment.

The next few days were spent mostly at the hospital. We spent very little time in the hotel, just enough to heat up some food (can’t cook everything in the microwave believe it or not) and send home the many, many pictures that we were taking to keep Brian up-to-date. We had time to attend a Sacrament Meeting and catch some people at the Detroit Temple and ask them to place him name on the roll there. But we made sure that we were there for rounds morning and night as much as possible. Every day there were new things to learn about Patrick’s condition.

Emily was swamped with the details of the adoption, the insurance, medical decisions, travel plans and keeping family back home in the loop. Because she had phone calls to make, I got to hold Patrick for many, many hours. He isn’t able to have much by mouth and the instinct to comfort a crying baby with a bottle or breast just wasn’t an option. We quickly learned the value of a “paci”.

The nurses there are amazing. They are caring and skilled. They seemed to have an instinct for being available but not in the way. I felt comfortable enough to sing him and tell him stories and I know Emily did, too. And I know that when we weren’t there, they were holding him and loving him just like we did.

I will forever treasure that special week getting to know this grandson. I am grateful for the self-less decision that Brian and Emily made to bring him into our family. They are amazing, completely prepared by the Lord for their role as Patrick’s parents.

Adoption Reflections: The call

First pictures sent to my parents

November is national adoption awareness month. It’s also the month that we adopted Patrick. The miracles of last year are fresh in my mind right now, and so I’ve decided to write a small series of blog entries about Patrick’s adoption. Please excuse me as I reflect.

It was a miserably snowy Wednesday afternoon. I was sitting at my kitchen table finishing a shopping list and trying to gear myself to go out in the storm when the phone rang.

It was Emily, our caseworker. She started the call like this: “There was a little Korean boy born in Michigan on Halloween.” I’m pretty sure my heart skipped a beat. I’d had this crazy idea in my head all week that I should have heard something about an adoption opportunity by that very week, and now here she was calling. I didn’t quite believe it.

When we’d applied to adopt, we’d explained to Emily that we were open to adopting a child with special needs. So her next statement didn’t surprise me. “He has some health problems,” she said.  She went on to explain the information she’d been given… that he’d had gastroschisis, a birth defect where the intestines develop outside the body, that he’d need to see specialists at an out-of-state hospital, and that he may only live a couple of years.

I didn’t know what exactly to say. I asked a couple of questions, then I told Emily I needed to talk to Brian to decide if we wanted to be considered as parents. She promised she’d e-mail me the details she had. This is the message I got:

We have a baby boy born 10/31/08. He has Gastrocesis and is only expected to live 1-2 years. He is part Korean and part Caucasian.

 

The  LDS birth mother wants to place with an family that will have the baby sealed to them.

Mary the NICU social worker said last night that the baby might be ready to discharge soon.  The adoptive parents would need to be trained in paliative care.  Why the life expectancy?  She said that d/t the TPN the liver would die out soon.  She said that the doctors are communicating with hospitals in Miami, Florida; Cleveland, Ohio; and Pitt, PA to be reevaluated for a surgury.

 

There was a picture attached, too.
My eyes won mom over

I tried calling Brian, but didn’t get through. I left him a message telling him to call me right away. I’m pretty sure I was crying.

While I waited, I called our insurance company to find out if they’d even cover a 5-day-old child with this severe of a medical problem. Meanwhile, Brian called back. He heard the end of my conversation before I told him the news. He said he’d come home right away.

The rest of the day was very emotional and prayerful. We’d said we were open to whatever the Lord thought was best for our family. Now that was being put to the test. What neither one of us had expected when we said we were open to adoption a medically fragile child was the grief we would feel. From the time the call first came, we both were grieving as though we’d just found out about a serious medical problem in a child who was already ours.

We went to the temple, where we could seek an answer through prayer and mediation as to whether or not this child was meant for our family. During the ceremony, I just kept thinking about how drastically this choice would change my life. It meant changing EVERYTHING in my life. But I also kept thinking about the promise of the resurrection, and of eternal families.

I was scared, but when Brian said, “I feel good about this. Let’s find out more,” my heart said “OK.”

So, sent a list of questions off to Michigan through our adoption agency. And then we went to tell our parents.

We had this adorable picture that I couldn’t take my eyes off of. There was something angelic about that little face. So we swore we wouldn’t show it to anyone… But we failed and showed it to parents. The picture was labeled “Patrick,” and we knew that was supposed to be his name.

That night my family started praying for Patrick.

We e-mailed off a list of questions about Patrick, and after we got a few answers, we sent a copy of our profile to be considered. Brian sent this e-mail to our families:

We have a little more information on the baby.  We are not the only parents considering adopting him.  However we did give our case worker the go ahead to forward our profile to the case worker in Michigan (i.e. throw our hat in the ring).

We don’t know when we will hear back, we doubt it will be today.  So the waiting game goes on.

It sounds as if he will need a lot of care (we pretty much knew that already).  They have also said that he will need a bowel transplant at his first birthday (we don’t know more about that).

Emily and I are doing ok.  We are both attempting to work today, I think I have accomplished 2 things since I got here.  I have started about 50 other things.

We are rather afraid of what we are approaching, but can’t even think about not doing this.  We appreciate your support in this decision, please continue to remember us in your thoughts and prayers.

Friday morning, we thought we had our answer. Brian wrote this in another e-mail:

This morning we both woke up with the feeling that he isn’t going to come to our house.  Whether that is just us preparing for the worst, or just a glimpse of what is to come, we don’t really know.

We had flu shots that day at Brian’s work. I had just met him at his office, when my cell phone rang. It was our caseworker. She told us that the birth parents had just seen our profile and wanted us to adopt Patrick.

We were stunned! We locked ourselves in Brian’s bosses’ office (thank goodness he was at lunch) and we started making calls. Because we’d been chosen as parents, we were now allowed to talk to the hospital social worker and the birth parent’s social worker at their adoption agency.

We sent one more e-mail to our families with what we’d learned.

Patrick was a full term baby.  He is completely normal except his bowels don’t work (they aren’t sure if they aren’t there, or if they just don’t work). Because he can’t eat he is somewhat fussy (who wouldn’t be).  We need to explore if he is a candidate for a bowel transplant, but that can’t be performed until he is 1.  He will be on a feeding tube until he can eat on his own.

The hospital won’t discharge him until we have things in place to take care of him here.  He will need to be on a TPN machine (what that means, we aren’t sure).  But that is equipment that we will need at our house.

Chicken and I have decided that we are going to go out to Michigan and see exactly what it is going to take to care for this Patrick.  We have not committed to take the child, but this is the last step before we do it.

I will give you more details once I can think straight, course that probably won’t happen for a while.  So I will give details once we get a bit more settled in Michigan.  And I’m sure that I will be in contact with you soon.

The rest of the day was a flurry of excitement as we ran around trying to pull together the necessary details to be able to fly to Michigan in the morning. We went to the adoption agency to finish the paperwork required for us to be able to see Patrick in the NICU. Meanwhile, my mom and grandpa worked to get us airline tickets. We packed for an indefinite stay in Michigan. One small bag held all the baby things we owned, including a baby quilt I’d just finished Tuesday night. We made a shopping list for the nursery that Brian would come home and put together if we followed through on the adoption.

And then we tried to sleep. It was probably one of the longest nights of my life! We didn’t know what the future held, but we knew already our lives had changed forever.

It’s a year later and some things are the same. This Wednesday was sunny, but I still sat down and made my list of errands to run. And today, Friday, we’re headed for our flu shots. Our families are still 100% behind us. And we’re still depending every day on prayer. But, as expected, pretty much everything else is different. What I didn’t expect was that, with as challenging as it all is, it is much more wonderful and rewarding than I’d ever expected.

Coming Home

Well, it took a few days longer that we’d hoped… But on a grand scale we actually made incredibly good time at getting back home to Utah. The ICPC came through late on Monday… unfortunately too late to do anything about it. So – Tuesday morning arrangements began to be made for the air ambulance. We were scheduled to leave Michigan at 2 p.m. Wednesday. Since space on the plane was limited, and there were things to do at home, Howie flew home Tuesday as soon as we’d made arrangements. I stayed behind to tie up the last loose ends and to take care of Patrick.

Of course, the best laid plans… Weather and mechanical things put the air ambulance enough behind that they had to take an FAA required break… So instead of leaving at 2 p.m., they finally made it to the hospital at midnight. I did my best to sleep before then… but Patrick wasn’t too keen on that idea so I was pretty tired even before I left.

The trip home was a very unique experience. 3 flight nurses and 2 EMT’s showed up around midnight and talked to the nurses at Beaumont to make sure they understood Patrick’s needs. Then, we wrapped him up in the snowsuit I’d bought for him at the last minute and strapped him into the carseat, which had been secured to a stretcher.

We made our way out through the ER of the hospital and were loaded into an ambulance. When transporting an infant, their biggest goal is to keep them warm… So the ambulance was a bit like a sauna. It took 45 minutes to get to the airport in Pontiac.

They put me on the plane first to get settled while they got things warm and ready for Patrick. Then they brought the rest of everything along. (Everything means Patrick in his carseat and a tiny little vital signs monitor and a tiny size pump for his TPN). Plus the flight nurses. We rode home in a leer jet so the space was quite cramped, but pretty comfortable. There were two nurses, a respiratory nurse (to make sure Patrick didn’t get hypoxic), and two pilots.

We flew at 70,000 feet because there is less turbulance at that altitude, so the climb took forever. But Patrick, who’d been asleep since we’d put him in his snowsuit, barely stirred. Once we reached altitude, I got to trade seats so I was closest to Patrick. But he was determined not to wake up. I had to work really hard to get him awake enough for his feeding, and then he fell asleep again right away.

Since he was determined to sleep, I went back to the comfier seat myself and tried to get some sleep in. I think I slept for about an hour and a half, and then woke up on time to start recognizing the silhouettes of mountains. One of the most stunning sights from the flight was the moon setting over the rockies, seen through the front windows of the jet.

We landed at the Salt Lake Airport about 4:30 and it took about 40 minutes to get loaded into the new ambulance and up to the airport. We found the NICU at just about 5:30. The hospital staff knew we were coming, but had expected us several hours before. And, for some reason, the ambulance crew didn’t think to call ahead and came in through a back entrance they weren’t expected to use… so we caught them a bit off guard.

They did an exceptional job through getting us in. I guess that, although the hospital had been in communication with the GI accepting Patrick, that information didn’t get passed along to many people. So, fortunately, the staff at Beaumont had done a great job educating us and we were able to help provide the basic information they needed to get started with his care.

They did pull me out to do some admissions and orientation stuff. And right about then the stress of the past day and the flight hit me. I was so glad for a stash of food and water in my bag because for a few moments there I was sure I was going to pass out. Fortunately, Howie finally got to us (he’d missed us because we came in an unexpected door) just as I hit the non-functional state and was able to take care of the most crucial things there.

Then, with Patrick mostly settled, we went home to get some much needed rest. I would have liked to spend a few hours with him, but I’d about hit my limit. So we got home at 7 a.m. Boy was it nice to see my own car and my own house!

We slept a few hours then got up, put the 200 some odd pictures we took in Michigan into a photo album (Howie had all those digitals printed), and then went to Thanksgiving dinner. It was early afternoon before we made it back to the hospital but Patrick was doing pretty well when we got there. He wasn’t sleeping, he was just laying there looking at his new surroundings. (He’s in a much busier room and I’m sure was confused).

That night, he got to meet my dad, his grandpa, for the first time.

Now we’re just trying to get things settled. We brought stacks and stacks of pages from his chart in Michigan with us. But- as we’d been warned they would- for most information they are relying on us to help explain. Again, we are so grateful for those doctors and nurses who took time to make sure that we really understood everything from Patrick’s care to his treatment, tests, and diagnosis.

This is a bit of a big adjustment for us. Different hospitals do things in different ways. Of course, the hospital wants to do their own assessment, so we’re repeating some things. He has to earn his way back off of pulse-ox and back into a crib. But they’re also being pretty proactive in his care. They’ve tried continuous feeding… but it sent his output levels through the roof. So now we’re trying progestamil by mouth… and he seems to be doing fine with it. We’re hoping to be transferred into the infant unit instead of the NICU pretty soon… but that all has to wait till the end of the assessment period, so it may still take some time. Some of the fun changes in this hospital are that we are dressing Patrick ourselves and he gets a bath 3 nights a week. I got to give him a bath last night, and boy oh boy did he love the baby lotion massage afterwards.

We expect things to pick up once we make it through the weekend. Yesterday, as people came back from the holiday, we started to meet some of the important people who’ll be involved with Patrick’s care. Monday we expect to see the most progress as things are finally back to work as usual.

The last legal hurdle

Our adoption process is a bit like a triathlon. The first leg is the home study and finding process. Most of you have heard about that. You answer a bunch of questions, clean every nook and cranny of your house (even the ones a caseworker would never look at), and then wait and publicize and wait some more.

The second leg for us has had a lot of hurdles. Some of the milestones have been a pre-placement agreement, enrolling Patrick in our insurance, a court date to establish custody, pre-authorizing a medical transport, and today we crossed the last hurdle… the Interstate Compact, or ICPC.

An ICPC is a formal agreement between two states about how an interstate adoption will be handled. It has to be finished before the child can leave the state. And we’ve been sitting here anxiously all weekend waiting for it to come through. And finally today at 4:15 EST we got the authorization we were waiting for to take Patrick back to Utah!

So now the only thing left for us to be able to go home is arranging the air ambulance for him. We expect that to be worked out tomorrow morning. If we’re lucky, we’ll make it home before Thanksgiving. (Knock on wood). Then the last leg is 6 months’ supervision and then the adoption will be final.

We are so excited to be able to bring Patrick home and let him meet the family and friends who have been praying so earnestly for him.

In the meantime, I’ve thrown a couple of other pictures of him in just because that’s what a bragging mom should do.

Patrick’s doing really well this week. His surgery on Monday seems to have been a success. A couple of days ago his jejunostomy started to work. They started feeding him again yesterday and today advanced him to formula. (Patrick doesn’t get much nutrition from food, but eating stimulates his other organs to work and may help preserve his liver and increase his chances of making it to a successful transplant.)

He’s also making great strides in winning us over. He’s pretty good at convincing me that I should hold him for hours for no reason beyond just that he wants it. I’m a sucker for the little smile he gives me when he recognizes my voice or my face. Howie’s not faring much better in resisting his charms.

The bestest birthday present ever

This year, my ultimate birthday wish came true. On Tuesday we were given custody official legal custody of Patrick. This was done in what was pretty near record time for the state of Michigan. Now we only have a couple of hurdles left before we can bring him home.

If you haven’t heard the sorry, we were contacted on November 5th by our caseworker and told about a little boy who’d been born the week before in Michigan. The details of his medical condition were pretty sketchy, but in essence, we knew that he had to be fed through an IV and that his chances of living past age 2 were pretty slim.

Our gut reaction was grief, mourning for the loss of what we’d expected in becoming parents. But, at the same time, we’ve always felt that adoption is a faith process and we at least owed this opportunity some serious thought and prayer.

Brian came home from work and we said and prayer and went to the temple. And – decided that we should keep learning more. The next day we got some additional information from our caseworker and sent a copy of our adoption profile to Michigan. We really didn’t expect to hear much more and did not expect at all to be chosen.

But – the next day, as I met Brian at his office for flu shots, the phone rang and our caseworker told us that Patrick’s birthparents had chosen us. (I didn’t care so much anymore if it might hurt to get a flu shot). We quickly got in touch with caseworkers and the hospital in Michigan to learn more. We decided that the best way to assess the situation was to fly to Michigan where we could see things first hand.

We arrived in Detroit Saturday evening and, after cleaning up a bit at the hotel, went to the hospital. We were met there by a bit of drama between the birthparents… and were not met by the caseworker here. We were introduced to the birthmother and her family, and then to Patrick. We learned that Patrick was born with a defect called short gut, meaning that most of his bowel is missing. Because of this, he’ll need a bowel transplant to survive. But – he is so small that he can’t have a transplant until he at least doubles in size… and his chances of surviving infection and liver damage that long are pretty slim.

We went back to our hotel room completely overwhelmed and quite ready to just go home. But – we’d promised ourselves that we’d spend a day with him, and so Sunday that’s what we did. We spent a day holding him and learning what kind of care he needs. One thing to know about Patrick is that, unless you know something’s wrong, only the tubes attached to him would give away his condition. In every other way, he is a happy, healthy little baby boy. And by the end of Sunday, he’d pretty much wrapped me around his finger.When I got back to the hotel I started copying pictures from our digital camera. When I came across the picture at the top of this post, my heart just kind of sang. I knew that I’d fallen in love with this little guy.

There were still a lot of questions to be resolved, though. We didn’t even know if the hospital in Utah would be able to care for him. So we spent Monday morning talking to doctors, nurses, insurance, and social workers.

Brian had to fly back to run a conference in Utah that same day. His flight left at 1. And we had to make a decision the same day. We really didn’t know exactly how things would work out… but we couldn’t leave Patrick anymore, and so we called the caseworker and signed the documents to begin the adoption process.

Michigan requires that the birthparents appear in court and be questioned to ensure that they made the choice to place a child for adoption of their own free will… so we had a tense few days as the agency prepared paperwork and worked to get an early court date. Fortunately, Howie had plenty to keep him busy at home and my mom was able to come spend the week with me here so that we didn’t have to face that anxious time alone.

And – finally – just two days ago on my birthday, the court placed Patrick in our custody.Now we’re praying for smooth sailing as the interstate compact is worked out and, even more importantly, as we try to figure out how to get Patrick home. The price tag on an air ambulance to Utah is $30,000. The care manager at the hospital is trying to persuade the insurance company to pick up the tab for most of that, but they (understandably) aren’t sure that they want to do it.

So, we keep praying and working, and most importantly, enjoying our new little son. The best part of any day for me is being able to sit with him snuggled up to my chest… especially now that Howie’s back to share the moment with me.

It’s too hard to keep up with all of our loved ones by telephone, so we’re going to do our best to keep you in the loop through this blog. Thank you all for the love and prayers and support on our behalf thus far.