Category: Holidays

A belated Christmas entry – including video

http://www.facebook.com/v/1248583248706

Well, it’s rather late, but I had to post a bit about Patrick’s Christmas.

This is the first Christmas season we’ve had to spend at home. Patrick came home last year on December 9th, so he was home for Christmas – but he was too young and we were too overwhelmed to count it as much.

This year, Patrick totally got that something was going on with Christmas! The tree intrigued him, though he didn’t start to undecorate it until after the holiday. He did love everything to do with presents and wrapping paper, though. In fact, the rolls of wrapping paper were motivation for him to finally really learn to roll over. He mastered tearing paper just on time to open a few presents with coaxing, as the video shows.

Christmas Eve we had a late breakfast with my brothers and sisters. Patrick wanted to explore, but his tubes kept getting in the way, so he stayed sitting with grandma, aunts and uncles most of the time.

We spent Christmas morning at home. Patrick was a bit overwhelmed by all the new toys, but happy nonetheless. Then we went and visited with each of our families. He was a bit tired by the end of the day, but did just eat up the time with people he loves.

Home again

I just wanted to take a minute to let you all know that Patrick and I made it home safely Saturday evening. The flight was a bit late and very full, but overall the trip went very smoothly. Patrick and I even got the opportunity to ride home next to a very kind woman. She and her husband are considering adopting and I got to spend the whole flight talking up adoption, especially special needs adoption. Patrick liked her, too, and even spent some time playing and cuddling with her during the flight.

We’re all pretty tired. Patrick and I both still have pretty bad coughs. Fortunately, Brian’s healthy.. but has been struggling to make up for the time he took off at work. On top of that, they scheduled a power outage last night. He ended up spending the whole night working to get servers back online.

On a different, and happy note, Brian and I celebrated our 6th wedding anniversary yesterday. With all that we’ve been through this week, it was a pretty simple celebration. My parents took Patrick for a couple of hours and we went to dinner and our first movie in well over a year.

It’s funny how life changes change perspective. Our anniversary was very low-key, yet I found myself overflowingly grateful to have the kind of marriage that doesn’t need a lot of frills to be happy. I love my husband more today than the day I married him.

Festival of Trees

The Festival of Trees is a big Christmas tradition here in Utah. Groups and individuals decorate and donate trees, wreaths, crafts and more. They’re displayed to the public for a week, and available for sale. All proceeds from sales, admissions, and goodies sold are donated back to Primary Children’s Hospital to help families in need.

We took Patrick to the Festival tonight. He wasn’t so sure about the crowds and was only vaguely interested in the trees. He did really like the chains used to protect the trees and the excuse to ride with Daddy and pull Mommy’s hair. At the end of the evening, we took him to meet Santa, which was a pretty good 1st Santa experience. Patrick loved his beard and sleigh bells.

This year’s Festival was a bit bittersweet for Brian and myself. There were a couple of trees there honoring friends’ children who passed on this year. Those brought tears to our eyes. It meant all the more to know first-hand the tender moments that happen in a children’s hospital. Just one way that Patrick has changed our lives and hearts for the better.

Adoption Reflections: The journey home

I think this will be the last in my adoption reflections series.

Things started to come together quickly once the court granted us full custody of Patrick. The adoption agency put in a petition for something called an “interstate compact” or “ICPC”. Basically, Michigan and Utah had to formally agree on which laws would govern the adoption. Meanwhile, the hospital social worker and discharge planner started working on the bigger question of how exactly we’d get Patrick home.

Patrick’s care needed to be transferred to specialists in Utah. He needed doctors here arranged and home care set up before he could leave the hospital environment. That meant he couldn’t just be discharged from the hospital so we could fly home commercially.

Eventually, it was decided that our best option was a medical flight. It took some juggling, negotiating, and everything short of outright begging to come up with the $20,000 cost of the flight, but eventually between our insurance company, a private donor, and our own savings, we had enough to book the flight.

Two days before Thanksgiving, the ICPC and flight were arranged, Patrick had a bed and a doctor at Primary Children’s hospital. We were coming home!

There wasn’t room for both of us and our month’s worth of luggage on the flight home, so Brian flew home Tuesday evening with the luggage. I stayed behind to take care of Patrick.

We were scheduled to fly out early in the afternoon on Wednesday, but some bad weather put the flight crew behind so it was after midnight before we left. We bundled Patrick up as warmly as possible. Then they strapped him to a stretcher. We went by ambulance to the airport, where a Leer Jet was waiting. We flew at 70,000 feet to stay out of turbulance. Patrick just slept the whole way.

Finally, we landed in Salt Lake and took an ambulance to the hospital, arriving about 4 a.m.

It was so disorienting to be in a new hospital. Nothing was familiar. I was tired and somewhat lightheaded from the long trip.

Brian met us at the hospital, and once we were checked in, took me home to rest. Leaving my baby all alone in an unfamiliar place was probably one of the hardest things I’ve ever done. But I knew I had to take care of myself.

After a couple of hours’ sleep, we got up and got ready for Thanksgiving. I finally got to see the nursery Brian and our friends had put together for us. We took hundreds of pictures with us to Thanksgiving dinner. And then, once we were rested and fed, we went back to the hospital – where’d I’d spend most of my days for the next 2 and a half weeks.

For the first time, it was our last name on Patrick’s nametag. We were just the parents, not the “adoptive parents”. Our families got to finally meet him. It would be a couple of weeks more before he left the hospital, but Patrick was home.

This year, he gets to come with us to his first ever Thanksgiving dinner. Two of them in fact! We’ve come a long way to get here. Probably the best journey I’ve ever experienced.

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.

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.

Fathers Day Reflections

Chicken and I had the opportunity to go to church at the hospital today (for those who haven’t heard, Patrick is in the hospital, but those details will come later). While we were sitting there a lot of emotions regarding fathers day came to mind. I thought that I would try to write some of those down.

First my very own fathers day… It seems like a long time ago. A year ago, Chicken and I were just starting into the approval process for adoption. Oh how things can change in a year. It is hard to believe that we now have a little guy that is growing and progressing. So this is my first official fathers day, the gray hairs show that I’m a dad.
It is also amazing to think about all the stuff that we have learned. It is a humbling experience to arrive at the hospital and have the doctors take orders from you. We (mainly Chicken) have come up with a routine that has Patrick growing and staying relatively healthy, the doctors don’t want to mess with that situation, so they listen carefully to how we do things. I appreciate all the wonderful nurses that will sit and listen to all the little things that we do for Patrick, and attempt to follow it.
This fathers day also makes me think about my father, who is out of the country, so I won’t see him today. I sure hope he is enjoying his time in Mexico, in some ways I wish Chicken and I were there to show him some of the joys of visiting Mexico. I can see a lot of me in my dad. Thanks for helping to make me the person I am today. (I hope that doesn’t sound conceded).

I have also spent some time thinking about birth fathers. They kinda get left out of the adoption picture, or get blamed for the adoption situation. I think that it is very rare that birth fathers forget about their children. Some may make choices that don’t reflect the love that they that have for that child. But they do make the sacrifice to give their child a good home with another father who cares about their child. In our case the relationship with the birth father has slowly grown, it shows very much that he cares for Patrick. Thanks, Nick.
Well I think is enough out of me for one post. I probably won’t tell anyone else that this is here, if you stumble across it, thanks for reading.
– This post was written by Brian, a.k.a. Howie

Gotcha Day

In the adoption community, the day an adoption is finalized is known as your “gotcha day.” Well, miraculous as it is, Patrick’s adoption was finalized on January 7th.

It took a couple of days for the news to get to us, and a week before the papers arrived and it really seemed real. But, late as the news is in arriving on this blog, it is true.

LDS Family Services’ lawyers were amazing and petitioned the court for early finalization so that there would be no legal hurdles to our taking Patrick out of state to be evaluated for transplant. And, well, the court agreed.

In following his holiday tradition, we submitted our part of the petition on Christmas Eve. But Patrick managed to finally have his own day in his gotcha day. January 7th is the day after we celebrate the Italian tradition of Befana in our house and wrap up our Christmas season.

We’ve made arrangements to go to the LDS temple with him on February 13th so that we can be sealed for time and eternity as a family. This is a special ceremony in our faith. We believe that marriage and families are intended by God to be eternal, not till death do us part. Marriages performed in LDS temples are performed for time and for eternity and children born into an “eternal” marriage are likewise a part of that family for eternity. A sealing ceremony provides that same promise for adopted children. Patrick will be tied to our family as though he had been born to us. This is something that his birth family wanted for him and a day that we have been looking forward to for a long time.

Inch by inch

Patrick is now 22 inches long and weighs a whopping 7 lbs 11.8 oz. Now, I understand this is small to some, but this means that he is just about out of his newborn size clothes… So right now, it’s HUGE to us! I can’t believe how well he’s growing. The doctors are pleased too.

The story of this week has been trying to get settled into a non-holiday routine. We had our last wonderful daddy-home days this week as the holidays came to a close. We went to bed early on New Year’s Eve because Patrick was willing, but still celebrated a bit when it was time for his midnight feeding. New Year’s day, Howie took some pictures of Patrick (just to see if the backdrop worked). We also watched a few bowl games and went to the mall just to have a warm place to go for a walk to help a bit with the cabin fever we’ve been experiencing.

While there, we bought Patrick his first church clothes. They’re overalls, of course, because that’s the best option of pants to protect his central line. And they’re also huge on him right now, since we bought 0-3. But I’m such a proud mama with a son wearing real clothes instead of just jammies all the time.

Medical milestones this week… They readjusted Patrick’s TPN (iv nutrition) to a 22 hour schedule instead of 24. This gave him 2 hours a day disconnected, which sounds pretty fun, but he’s decided is his preferred time for sleeping, so I don’t think he knows much difference. This week we go to 20 hours… we’ll see how that goes.

We’ve had to start doing a lot of replacement fluids this week. He doesn’t have the right portion of intestine to reabsorb stomach juices so he’s at a really high risk for dehydration. We keep track of all the fluids he loses and then calculate what he needs to have given back. Previously, we hadn’t been replacing much… But this week things got really high. That means one of two things. 1) He might be sick and just manifesting it differently. Fortunately, though, no fevers so far. 2) He might have just hit his limit for oral feedings. We’d been increasing things, and this might just be all that he can handle.

In other news, his labs this week are starting to show the beginnings of liver trouble… which we expected to see at one point or another.. so some adjustments may need to be made to the formula of his TPN. He’s also starting to be a bit anemic again. (Too much labwork required for a kid who’s not old enough to make his own blood cells). I guess it’s time for us to start praying that his body kicks in soon and his blood counts look better. Transfusions put the success of a transplant at risk, so if we can avoid another one, it would be ideal.

Mom and dad are doing fine… Just ever busy and ever sleepy. Fortunately his Christmas sleeper still works wonders and he isn’t up nearly as much at night.

Patrick’s First Christmas

Although this picture may not reveal it, Patrick had a very nice first Christmas. It almost came and went, we’ve been so busy. It was a definite feat to get Christmas letters out (sorry to those of you who are still waiting), goodies made (again, sorry if you haven’t gotten yours yet), the tree up (only took a week of intermittent effort) and presents bought and wrapped.

But the most important elements of Christmas were still there. Brian and I had our traditional Christmas Eve dinner and Patrick played in his bouncy seat nearby and enjoyed his feast of 14 mL’s of formula. We opened our Christmas Eve pajamas (another family tradition), and Patrick loved his so much that he slept his best night yet in his. We decided it was probably the last year we could get away with sneakily opening our other presents on Christmas Eve (this is a remnant of being the kidless ones who travel around to family on Christmas Day)… so we opened all our presents before going to bed. All in all, considering everything that’s happened in the past month, it was still a very nice Christmas. I can’t wait to find he time to dig into the books that Howie bought me.

Patrick’s had presents rolling in all week, so we only wrapped him one for Christmas… a gloworm that he loved so much when we found it in the store that we had to buy it. But he was definitely spoiled by friends and family… and we were able to finally just about finish getting his nursery furniture, appliances (yes, he has his own fridge), and decorations together.

We spent the afternoon and evening… and actually all weekend… visiting with family. Everyone loves holding Patrick so much that I have a hard time keeping track of it so that it’s fair for everyone. It was fun to be able to share him with grandparents, aunts, uncles, and cousins.

We’re hoping for one more miracle this Christmas and will post details about it as soon as we know if our wish comes true.