Tag: family

Transplant Day 29 and some gut rest

Well last night was frustrating. The nursing staff was spread thin because of the holiday and it took a lot longer than usual for them to respond to the non-critical things. From 10-11 p.m. one of Patrick’s antibiotics ended and the pump alarm rang and there was no one to shut it off. I silenced it for a while, but Patrick insisted that it was the nurse’s job and my job was just to cuddle and talk to him. How can you argue with that?

Unfortunately, the nurses were trying not to bother him while he slept, so every time Patrick woke, they’d try to come in and do vitals. Problem is, that mean they were in the room half an hour each of those times and we were awake at midnight and 5 and 5:30. (Not complaining about nursing… just stating trouble with sleep that comes with not doing well.) Then, at 6 Patrick’s nurse came to deliver the news that the resident didn’t want to come drain his gut again “unless he’s really uncomfortable.” Well – 10 minutes later, Patrick woke up crying. He said “bucket” and, before I could react, he threw up all over everything.

Yes – uncomfortable. Apparently, with nothing moving out of his gut and feeds still moving in, Patrick’s gut and belly had finally had enough.

So we got him up and changed the bed and gave him a bath and turned on some Blues Clues. And we waited for the doctors to come for rounds.

Rounds were actually kind of a relief today. They talked about different causes for this new problem and tests that could look for those problems. They aren’t thinking rejection at this point.. perhaps some inflammation or something called an ileus where the gut just temporarily stops moving or a mechanical issue with the muscle wall around Patrick’s stoma or a type of irritation called pneumatosis.

Then, Dr. Mercer came into the room to try out draining Patrick’s belly himself. When he saw how little a catheter needed to go in to immediately drain, he was actually really relieved. He said that ruled out a lot of possible problems. It also eliminated the perceived huge risk of draining. He showed Brian then and there and wrote orders that the nursing staff or parents could do that as often as needed.

They also stopped feeds, restarted TPN, put Patrick’s g-tube to suction so he wouldn’t have to throw up any more, switched as many medication as possible to their IV forms, and ordered some tests. The rest of the morning was very busy. Patrick had an x-ray of his abdomen and then later a CT scan to look specifically for pneumatosis or any other narrowings or problems. I guess we did a good job selling the idea of how fun a CT can be because Patrick had already been asking if he’d get to go in the “donut” again. We got comments from the radiology staff and nurse about how comfortable he was doing something that terrifies most other children.

Patrick and daddy in a wheelchair headed to CT
Patrick and daddy in a wheelchair headed to CT

Later today, they’ll come do an ileoscopy (scope through the stoma) and biopsy again.

Hopefully, one of these tests will show us what is going on. It is possible that Patrick’s belly just needs to rest and reset after all of the trauma of last week.

Regardless, with symptoms alleviated, the rest of yesterday was a good day. Without pain, Patrick was feeling up to sitting up and playing more. (In fact, he was more than a little afraid of his bed after all the scary things that had happened there this past few days, so he was doing all he could to get me to let him be in other places.) This means that his lungs have opened up and he was able to wean off of oxygen. His lungs are still recovering and they are trying to get the fluid all the way out of them and the lungs totally reinflating. His oxygen saturation is a little bit low and he sets off alarms when he sleeps, but he quickly rebounds and no one comes running at this point.

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Having family here definitely lifted his spirits, too. He and I were both worn out and frustrated and mad yesterday. It would have been a hard day had just the two of us been trying to be together. But Patrick’s family made him feel like a million bucks. Really, seeing the pride in his eyes when I came back from doing laundry (it was a big laundry day) at having his uncle all to himself was impressive. And seeing him happy and laughing as he played with his cousins was a big treat, too. This little boy needs people and fun.

Brian went with Mark’s family to the zoo in the afternoon and Patrick and I took a much needed nap and some quiet individual play time.. But then they came back and we played in the playroom and went out to a break room to eat dinner.. and then back into the room for another priesthood blessing. (Patrick asked if Mark could help daddy give him one.) Then they gave him some gifts, including a ball that was then used to play monkey in the middle. He laughed and laughed.

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When they left, I let him stay up and watch some of his new Dora DVD while we finished up his care and I got ready for bed.

I’m finishing this blog post up in the morning. Patrick has slept soundly all night. X-ray snuck in at 5:30. (Patrick’s nurse is fairly mad they did because she guards to be sure they don’t wake patients who don’t need it.) Patrick was really upset about it, but then tucked up his arms under my side and went back to sleep. A little later they came to draw labs, saw his bed needed cleaned up, and the same happened.

After such a long and hard week, it is so good to see him comfortable and sleeping peacefully. Hoping that goes a long way towards a better day today.

Patrick’s days are busy right now. He starts the day with labs at 5:30 and a chest x-ray at the latest moment that the nurses will allow to get him sleep but still get the results on time for rounds. He has meds at 7 and at 9, and because he doesn’t feel well, that means running zofram for nausea first. He has 2 antibiotics each given 3 times a day with a benadryl pretreatment before. He has respiratory therapy 3 times a day. He has vitals every 6 hours. And diapers. And stoma care. And a bath. And pain management. And getting up to walk. And trying not to go stir crazy.

It’s been 4 weeks since transplant. One thing we know from this journey.. So much can change in a day, or week, or month. We really appreciate all of the ongoing support and love that you offer Patrick, near or far.

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Mom’s Wish Trip Recap

I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.

It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.

I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.

And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.

Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.

I could tell you how amazing it was to receive the same magic treatment at each theme park, too.  We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.

And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too?  Yeah, sometimes we parents do crazy things for our kids.

Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.

We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.

Brian didn’t tell you much about the last days of our trip.

We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.

Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.

It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.

Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.

Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose.  He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.

Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.

We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!

It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.

It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.

Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.

Here are some pictures taken of us by Give Kids the World and Disney.

 

Christmas in Patrick’s House

DSC_9449Well, despite the fact that Patrick spent most of the week before doing forbidden things and saying “naughty, naughty, naughty,” Santa still came to Patrick’s house.

I was very excited to share Christmas with a little boy finally old enough to understand. In fact, I was wide awake at 5 a.m. after having a horrible dream about needing to collect a sample to test for C-Diff… and could barely get back to sleep because I knew it was Christmas!

Patrick, on the other hand, slept until 9. Brian and I actually got up and started making breakfast before the little munchkin dragged himself out of bed. Who was I to argue with him sleeping in on a day when naps would be near impossible?

IMG_2526 IMG_2527He loved opening presents, though wasn’t so keen on the fact that mom and dad kept taking the new toy away to give him another present to open.

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Still, it was quite the Christmas complete with lots of Elmo, cars, new clothes, books, and a stocking with goodies of bottled water and puffs.

Then, we finished breakfast. I found that I could make decent eggless milkless pancakes from a mix, so we made some silver dollar sized pancakes for Patrick and some big, fluffy, pecan laden pancakes for mom and dad.

We ate and then, still in PJ’s went to take presents grandma and grandpa. The rest of the day we visited family. We had a big family get-together with my family at my grandpa’s house. The place was so packed with cousins and gifts that you could barely walk!

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We spent the evening with Brian’s family. His brothers drove in from out of state and for the first time in years, the whole family was together on Christmas day.

At last, exhausted, we headed home to bed. Christmas was everything I could have dreamed!

As I reflect back on this Christmas season, I realize just how blessed we have been this year. In the midst of all the hustle and bustle, the presents and family and good food… I’ve had a few little moments where I realize that we have been given the greatest possible gift this year. Our little boy was able to share in all of the Christmas magic with us.

 

This year, Brian’s company party took us to the theater for a production of A Christmas Carol. You know, I think I’ve seen or read that story at least a hundred time in many, many formats. I’ll admit, the character Tiny Tim has always seemed a bit romanticized to me.. how could a little boy really make THAT big of a difference?

This year, it took a conscious effort to hold back the tears. Having Patrick in my life has taught me just how a very special child can really touch hearts and lives. I understand why Bob Cratchit would stay working for that awful Scrooge. And what’s more, I understand why Christmas in their house was so very special.

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Dickens described Christmas in the Cratchit household with these words:

“There was nothing of high mark in this. They were not a handsome family; they were not well dressed; their shoes were far from being water-proof; their clothes were scanty; . . . But, they were happy, grateful, pleased with one another, and contented with the time; and when they faded, and looked happier yet in the bright sprinklings of the Spirit’s torch at parting, Scrooge had his eye upon them, and especially on Tiny Tim, until the last.”

Happy, grateful, please with one another, and contented with the time. That is how I’d describe our Christmas this year. With our own Tiny Tim, each seems a little more precious.

Yes. We had a very merry Christmas in our house.

An evening to remember

It’s been two weeks since Patrick’s Hope Concert and I haven’t blogged about it yet because, well, how do you even try to capture something like that? It was something we’ll never EVER forget!

Friends, families and even strangers came together in amazing ways.

Brian met the sound crew and musicians at 1:00 p.m. I think he had a great time tagging along during sound checks.

Meanwhile, our wonderful friends and family worked to set up the silent auction.

It was after 5 when I got Patrick’s afternoon medical care taken care of and got back to the school where the concert was being held. What I found was amazing! All the auction donations displayed on tables looked so different than they have sitting in my basement. The community was so generous! There was far more there than I’d realized had been given.

The auditorium seemed to have been transformed. When we toured the school months ago it had seemed like a shabby school auditorium. Now, with instruments on the stage and Patrick’s image filling the wall, it looked like a concert hall.

Before long, volunteers and guests started arriving. Soon the lobby was shoulder to shoulder with people we love. Our adoption caseworker was there. So were some of Patrick’s favorite nurses. Co-workers. Friends from church. Family. His doctor. I wish there had been more time so we could have visited with all of you.

We decided to watch the concert from the balcony. (It wasn’t officially open).  We wanted Patrick to have lots of room.. and to watch the concert where it wouldn’t matter if the applause scared him or if he was too sleepy. This was a good thing because his only nap was 11 a.m. and the concert started just half an hour before bedtime.

We owe a huge thank you to Paul Cardall for all he did to put together an amazing concert! He had me crying from the start. The other musicians deserve a thank you, too.. For giving their time, talent, and even equipment to make the night work. So thank you Charley, Sam, Mindy, Steven, Marshall, Kevin.. and to the other musicians who I may not have met but who came and shared their time and talents.

It was so fun to see everyone in Patrick’s “Got Guts?” t-shirts! Just one more thing that made us realize that this night really was for our family!

A big thanks is also owed to Seth Mitchell who worked miracles in getting us a concert quality sound system, donated no less, and a crew of very talented engineers who mixed sound, ran lighting, and otherwise put together the look and feel of the concert. We couldn’t have done it without you!

While I’m expressing thanks..Thank you to my mom who put so much time and effort into pulling this event off! Neither one of us knew what we were doing, but you certainly stepped up and figured it out. Thanks to the rest of our friends and family. Dad, Dick, Phyllis, Jill, Cindy, Michelle, Jay and friends Kirstie and Tifanie who came to meeting after meeting and worked to pull everything together. Thanks to the many friends and family members who came to staff the event. Thanks for keeping me sane!

Thanks to the businesses and individuals who gave to the silent auction. I was touched with each donation that would show up. I wish there was space to put all the stories here.. as almost every item has a story behind it.

And finally.. thanks to all of you who came to share the evening with us! In that big auditorium, we looked few in number.. but there were several hundred of you there. The event definitely made a difference! We more than doubled the donations received thus far. I don’t dare publish a number, because my doorbell still is ringing with people giving more.

Beyond helping with Patrick’s transplant fund, though… You helped us a lot by heart, too! Knowing that there are so many of you who would give up a Saturday evening to come and celebrate Patrick’s life with us was means so much!

This has been a tremendous journey with Patrick. Each day with him is a miracle. I feel as though he’s outlived his expiration date time and again. It was wonderful to be able to take a night and celebrate that miracle with the people who mean the most to us.

A trip to the zoo

We took Patrick and his cousins (and their parents, and grandpa) to the zoo yesterday. The last time we were at the zoo, Patrick was far more interested in the enclosures than in the animals themselves.

This time, however, he started to take notice that there was something different there to see. In fact, in the giraffe house, he tried all he could to get me to hold him close enough to touch the giraffes. (This could be especially dangerous because one of Patrick’s favorite games is to bonk his head into things he likes).

As is often the case with Patrick, this zoo trip was a little more complicated than your average outing. Patrick’s temperature was a bit high yesterday, so I carried a thermometer around in my pocket to check it regularly.. With the children’s hospital less than 10 minutes from the zoo, we figured we’d see all we could, and then run quickly if he got into the danger zone.

On top of that, while putting Patrick into his stroller, I managed to snap the tubing for his lipids in half. Thankfully, the lipids are just his “cheeseburger”.. needed fats and calories, but optional enough that we could wait till we got home to fix it.

Thankfully, the fever hasn’t evolved into worse and the lipids were restored without incident. I’m sure Brian’s brother thinks that we always have this kind of complications whenever we go anywhere. And, I’ll admit, it happens more often to us that I’d like. But as frustrating as it may sometimes be, it really is worth all the extra work it takes to do these family things when we can.

I am thrilled that Patrick was able to enjoy the zoo. And that he picked my favorite zoo animal to try to pet.

Adoption Reflections: The best gift

Today is my birthday. Brian’s been asking me for weeks what I want for my birthday. The problem is, last year I got one of the best birthday gifts that I could have ever wished for. And this year… well, I can’t think of much more I’d wish for.

Last year my birthday was a pretty quiet event. My mom had flown home to Utah after a great week together. (She was good enough to blog about this.) I’d picked Brian up at the airport the day before. Patrick was recovering from surgery and was pretty out of it.

My mom had told a few of our favorite nurses that it was going to be my birthday.. so I was greeted with birthday wishes when we arrived at the hospital in the morning. Patrick was just waking up. For a kid who’d just had surgery, he looked great!

But that wasn’t the biggest event of the day. See, in Michigan, the birth parents have to go to court to relinquish custody. We’d been told that this process could take weeks, if not months. Until then, although we had rights, so did the birthparents – and in a hospital situation, with privacy laws and medical consent to worry about, the result was some awkward situations for us as adoptive parents.

The lawyer at the adoption agency had made some heroic efforts and gotten a court date just over a week from the time we signed our adoption paperwork. That morning, Patrick’s birth mom and dad went to court.

We met them for lunch shortly afterwards. I’ll never forget the image of Patrick’s birthfather comforting his birthmother as we walked into the restaurant. We had a nice lunch and got to know each other a bit better. This was the first chance we’d had to meet Patrick’s birth father. I tried to remember it all so I could tell Patrick about them someday.

Then we went back to the hospital. One of the best parts of time in the NICU with Patrick was naptime. He was in a very nice room with a comfy recliner. We could sit for hours in that chair with him snuggled up. With this sweet little ball of baby on my chest, the lights dimmed, and music playing in the background, it was impossible not to fall asleep sometimes. We called them “Patrick naps”. They were the highlight of my day. So after lunch, Brian and I each took a turn with a Patrick nap.

That night, we splurged a bit and went out to Benihana for dinner. My birthday cake was this funny little ice cream roll with a pink paper umbrella stuck in it.

This birthday didn’t have wrapping paper or candles. No one sang “Happy Birthday”. I didn’t have a party until weeks later. I didn’t get any cards. I didn’t even see most of my friends or family.

I didn’t open any gifts on my birthday. But I did get the best gift of all. Patrick was officially ours. I was officially a mom.. and best of all, it happened on the day I’d set as my arbitrary deadline. I didn’t want to turn 29 without being a mom.

Patrick’s life has been one of the best gifts I’ve ever received. He has healed sorrows I didn’t think could be healed. He has taught me patience and courage and love.

So please forgive me if this year I’m not very worried about present or parties or cakes. This morning Patrick grabbed my hair and pulled my face down to his and give me a big wet sloppy kiss right on the mouth. That is gift enough.

Adoption Reflections: Getting to know you

I left off my story the night before Brian & I flew to Michigan.

Saturday morning, Brian and I got up before the sun. We went shopping for a few more baby things and for some presents for Patrick’s birth family. Then we went to the airport.

It was so strange waiting in line with a carseat, but no baby. In fact, the sight of us juggling so much luggage and an empty carseat drew some attention. A very kind man ended up helping me in line while Brian was off getting some money at the ATM. We were talking about our reasons for flying. He was taking equipment to Africa where he was going to teach people in 3rd world areas to build and maintain wells. When I explained why we were flying, he was in awe. It was very strange to meet this great humanitarian and have him be impressed with what I was doing.

We were flying standby, so Brian ended up about 10 rows behind me. I remember hearing him telling other passengers why we were flying and thinking “This is all so surreal.”

The amazing thing was, for all I was nervous, it was also all so peaceful. I’ll always remember how beautiful the fall leaves were on the trees as we landed.. and how right everything felt.

It was evening before we got to our hotel room, and then to the hospital.

We arrived and explained why we were there and were shown to a family waiting room. Where we waited, and waited, and waited. Finally, we met Patrick’s birth family… his mother, grandmother and aunt. Our timing couldn’t have been worse. We ended up arriving in the middle of a family crisis. But they amazed us with the grace and kindness they showed us.

We talked to the head of the NICU and to Patrick’s family for a while…learned more about his medical needs, and then finally got to meet Patrick.

I remember thinking that he was SO tiny! Just this fragile little ball of baby, with a head full of black hair. I got to hold him that night and was just amazed by him. We also got to know his birthmother and her family a little bit.

Soothed by my paci

We went back to our hotel a bit overwhelmed and not sure what to do. We were overwhelmed by how much of his medical status we hadn’t known… and by the whole situation in general.

But, we’d made a committment to give Patrick a day, and so the next day we went back to the hospital. We explained to the nurse that we’d like to learn all we could about caring for Patrick, and she was wonderful about giving us that chance. She taught us to change his diapers (around tubes). And she let us hold him.

Brian and I each got some time alone with him that day. I remember holding and rocking him and singing to him the words of a children’s song:

“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 heart broke at the idea that Patrick didn’t yet know where his earthly home and parents were. And I didn’t know if I was able to provide that for him or not.

As the evening wore on, the head of the adoption agency finally came. She’d gotten word that no one from the agency had really acknowledged our arrival. She explained to us Michigan’s adoption laws, and what she knew of Patrick, his medical needs, and his birth family.

While she was there, two elders from our church arrived… courtesy Patrick’s grandma. (I’ll forever be indebted to her for sending them). They came to bring us the sacrament, and while they were there gave us priesthood blessings of comfort.

We visited with the adoption supervisor for hours, and then went back and spent a bit more time with Patrick. Then we went back to our hotel.

That night, as we were sorting through the dozens of pictures we’d taken that day, one jumped out at me. I looked at it and just KNEW that I loved this baby! And that I wanted him to be my son.

First days

Monday morning, we went back to the hospital. Finally people were there! We met more doctors, the hospital social worker, and the care manager who’d help us to get Patrick home. Calls were made to Primary Children’s to see if the doctors in Utah could take care of Patrick. His surgeons came and talked to us about Short Gut and transplantation. Finally we felt like we were getting a grasp on this situation, and amazingly, we felt like it might be something we could do.

Then we had the big decision to make. The night before, the woman from the adoption agency had explained that the papers we’d signed in Utah would expire if they weren’t filed on Monday. Besides, Brian had to fly back to Utah that afternoon for a conference at work. We had to make a decision before he left for the airport about whether or not we were adopting Patrick.

We held a “family conference” that morning… Just Brian, Patrick and I. We talked about the decision we were facing… and the fact that we felt ready to move forward. Then Brian turned to Patrick and asked him if he’d like to join our family.

He had been sleeping, but he opened his eyes and kind of looked at Brian, as if sizing him up. Then settled back down to sleep in his arms, as if totally content. We took that as a yes.

We asked our nurse to take our first family picture.

At 1, Patrick’s social worker from the adoption agency and the hospital social worker met with us. We didn’t have much time, so we signed papers in a hurry. Then we left to take Brian to the airport.

And that was it… Brian kissed me goodbye at the curb and said “Take care of our son.” We had a son! One with far more troubles ahead that we could imagine… but one who also just filled every room he was in with the feeling of peace and joy.

We’ve never looked back. Patrick is our little boy and we love him with all our hearts!

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.

Patrick’s 1st Birthday Party

Patrick had SUCH a good birthday! He could tell from the party preparations the night before that something good was going on. He watched me decorate his birthday cake… and then was too happy and excited to go to sleep.

He did, though, finally, and when he got up in the morning, he was again just HAPPY! It’s like he knew this was a big day.

Because Patrick’s birthday is on Halloween, we dressed up and invited guests to do the same. We chose a circus theme for the party. Patrick was dressed as a monkey. Brian was the ringmaster. I was a clown.

We spent the morning finishing things up for the party. He thought watching me hang streamers was great fun! (I used red and white streamers to create the feel of a circus tent in our living room.) About 1 we changed into costumes.. he loved my clown wig and played with it for most of the rest of the day.

Slowly the guests arrived. Because Brian and I have brothers, sisters and parents nearby, we knew there would be a lot of grown-ups… so we made all the circus activities self-serve. The adults helped the kids paint their faces and learned to make balloon animals for them. We had popcorn and animal crackers and caramel apples.

Of course, most everyone came in costume. Some carried on the circus theme… My dad came as a lion tamer, with my mom dressed as his lion. My brother was a magician.

Some of the friends and family who dressed up

Once everyone arrived, we sang Happy Birthday and Brian blew out Patrick’s candle. (Patrick was too confused about why everyone was singing and just kept watching me to see if it was OK.)

He’s not allowed sugar, so he couldn’t have cake, but he was given permission this week to have cheetos and hulless popcorn, so that’s what he munched on instead.

Daddy’s better than any boring old snack.

Then we opened presents. He got lots of new toys and some new clothes. He loved them all, but I think his favorite thing about the party was not the gifts, but the fact that all the people he loved best were there.

Patrick & “Papa”, Brian’s dad

Patrick and Grandpa, Emily’s Dad

The party wrapped up around 6. All the kids went home with hands full of balloons, balloon animals, caramel apples, and cracker jacks with faces all painted. I think everyone had a really good time!

That put us just on time for trick-or-treaters. Patrick didn’t go trick-or-treating this year… he’s too little and not allowed candy anyway. At first he liked seeing all the people who came to the door. Eventually he got tired and not too happy when people would ring the doorbell. Eventually I sat him on my lap and we read books until we were sure he was good and tired. Then, we turned off the porch light and put him in bed. He was exhausted, and so were we.We all crashed for the night.

Thanks to all who helped with Produce for Patrick

Last Saturday, friends, neighbors and family put together a produce stand in Patrick’s behalf.

I just wanted to take a moment to thank all those who helped to make this event a HUGE success. Over $500 was raised in that day as generous people came to buy the fruits and veggies that had been donated. There was an amazing outpouring of generosity from loved ones and strangers alike in donations from 25 cents for a cup of lemonade to far more than the value of the fruits and veggies taken home.

Thanks to Tifanie who had this idea and spent countless hours talking to neighbors and picking fruits and veggies to make this stand a reality. Thanks to Kari, Amber, Jill, and others who gave time to help in gathering the donated harvest. Thanks especially to those who offered the surplus from their gardens and fruit trees.

Thanks to my friends and family who helped in the planning, setup, and manning of the stand, especially to Mom and Jill who’ve put so much work into pulling together our COTA campaign.

Thanks to Chris and Bella and the other kids who helped with the lemonade stand and tenaciously tried to sell a cup to anyone and everyone who arrived at the stand.

And finally thanks to those people who came out of their way to buy from our stand and to strangers who saw it driving by and stopped. We wondered going into this if anyone would stop and buy fruit from a stand that was only there for a day. We were overwhelmed by the response.

I’m hoping that some of the people who were there will share their experiences here on this blog. It was definitely a day to be remembered.

This little stand gave us hope and got us excited for what the days ahead. I can’t wait to see what other little miracles are in store.