Family – Page 3 – Patrick Hoopes

Mother’s Day

Patrick is feeling much, much better now. The infection has been well treated with the medicines he’s getting. He’s stable, happy, and playing. Doesn’t need monitors. Doesn’t need much attention at all, except giving his medications on time. There’s only one thing keeping us here. . .

Because this is the 2nd time in a very short time that Patrick’s had a yeast infection, they wanted to make good and sure that the bug is dead before they put a new line back in. Right now, Patrick has a good “deep line” in his leg. This means that it is in deep enough that they can draw labwork out of it and give better nutrition through it. However, it doesn’t go all the way to his heart, which means that it’s not as likely to get infected – but it’s also not really the safest for taking him home with. He’ll get a new central line on Tuesday and go home as soon as possible afterwards.

So, we spent Mother’s day in the hospital. It was a good day, though very quiet. We got to visit with both Brian’s mother and mine today. Patrick got to get all dressed up and go to church. (Best dressed patient in the hospital today, I’d bet.)

Being here has been a good opportunity for me to reflect on how grateful I am for the many different types of mothers who play a part in our lives. Mothering Patrick is not the kind of job I could do all by myself.

I’m grateful for a mother and mother-in-law who’ve been willing to step up and step in to learn how to provide Patrick’s medical care so that Brian and I can get the occasional night out or so that when I’m exhausted and at my wits end I have somewhere to turn. You may not know what a rare priviledge that is that you have given to us.

We are grateful for our mothers. You prepared us to be Patrick’s parents and you help us each day to do it. I don’t think it’s possible to count the number of prayers, meals, phone calls, visits, crazy projects, and more that you have offered for our little family.

I’m grateful for sisters and a sister-in-law who are also there to help lighten my load when I need it, to fill the fun aunt roles. They are helping to raise some spectacular children, Patrick’s cousins, and him as well.

I’m grateful this week for nurses and CNA’s who have taught me how to do this job, who’ve sat rocking Patrick in the dark so I can catch a few hours’ sleep, who listen when I need to cry or share in small, although sometimes icky, triumphs and who make my day every time we see them because of how much they love my child.

I’m grateful for Patrick’s birthmother. I have no doubt that she loves and is proud of Patrick. I am impressed by her strength. I’m grateful to his birth grandmothers who trusted in their children and loved Patrick. It’s not easy to support a son or daughter considering adoption when you know it means a grandchild will be far away. We are grateful for the love and trust and support they’ve shown in us. We also owe thanks to Patrick’s aunts who helped offer comfort when needed and still are lovingly watching over him. What a blessing it is that he was born into a family who loved him so much.

This mother’s day, thank you to all of you mothers who are there for us. You come in all shapes and sizes.. friends, neighbors, family, and more. I couldn’t do this without you.

“Pennies for Patrick” – Edison Elementary

For the past month, Edison Elementary in Salt Lake has been doing a fundraising drive called “Pennies for Patrick.”

Today, they asked for Patrick and his family to come and be interviewed for their morning school news. What a treat this visit was! We got to meet the 5th grade class who’s been spearheading the fundraising efforts. (Pictured above).

I was amazed at how much they knew about Patrick already. And at how well thought out their questions were. They wanted to know about his TPN. (They knew it by name). And why he needed his nutrition to go to his heart instead of his belly.

Two kids took us to the faculty lounge where they did an interview that couldn’t have lasted more than 2 minutes. It was so well rehearsed, though, and very professional. When we told the kids that Brian had gone to school here years ago, they were pretty excited. But when the camera’s rolled, it was all business.

All of the kids were so excited to meet Patrick! Brian’s mom is the secretary at this school so some kids put 2 and 2 together when they saw her with him. We started to hear “Is that Patrick?” whispered as soon as we entered the halls. Soon, kids were chasing us down the halls to be able to meet him.

My favorite quote of the day was from a little hispanic girl who said, “I thought he was all white. But he looks a little brown.” In school where the “minority” population is the majority, it was nice that Patrick, with his Korean features, fit right in.

The generosity and kind-heartedness of these children is amazing! For weeks, they’ve been sneaking in before school to put money into donation boxes. One teacher lifted theirs today and struggled under the weight.

I met a girl who put together a yard sale all by herself to collect money for Patrick. She came to school with a jar full of cash she collected. She told me today, “I knew a little girl who was 8-months-old who was sick and my church helped her. When I heard about Patrick, I wanted to help. I like helping babies. I want to be a doctor when I grow up.”

Pennies for Patrick was scheduled to end last week. The school voted to extend it till the end of this month, though, because they were having such a good time.

My heart was so touched. I wanted to cry, but couldn’t wipe the smile off my face as we talked with all of these children. Edison is not in a wealthy neighborhood. Many of these families don’t have much themselves. But they are so proud to be giving to help our son.

Thank you Edison Elementary!

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: 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.

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.

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.

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

Firsts

We’ve been a very busy little family lately. Patrick is 5 months old now. And in the time since I last posted, we’ve had a lot of firsts. So, here are some highlights.

First giggles
Patrick learned to laugh a while ago, but we didn’t get out and out chuckles until we discovered that the kid who used to scream his head off whenever he got undressed is ticklish and loves to have his clothes off. Dressing and especially weighing are now favorite games… but it’s best when daddy just picks him up without clothes on and tickles his back.

Today we learned that you can also get belly laughs if you squish his cheeks.

First fever
Well, it all started with a cold, that turned into croup. After a week and a half trying to fight it off, Patrick got his first fever. Fortunately, it didn’t go much higher than 100.4 (38 degrees Celsius) and so we were able to have blood cultures drawn at home and his fever was gone in a day. No infection, thankfully. Just a day at home with Mom holding Patrick and taking his temperature every half an hour to make sure it hadn’t hit the danger mark yet.

First necktie
My brother Steven got married at the end of March. Although we were crazy busy working on his wedding cake and pictures, I just couldn’t help taking the opportunity to make Patrick and Brian matching neckties. We bought a tie with a matching handkerchief. Patrick thought his tie was a great toy to hold and chew on.

Oh, and a disclaimer on this picture. Patrick hates bright lights of any kind and we had studio lights on. Someday we’ll get a family picture with him not crying.

First rollover
I set Patrick down and turned my back on him for just a minute. When I turned back, he was on his tummy looking up at me as if to say “Whoa, Mom! What do I do now?” So far no signs of him having any idea how he did this or how to do it again. But we’re having much more play time on the floor to encourage him.

First haircut
After weeks of trying, we finally got time to take Patrick to my Grandpa’s house for his first haircut. In my defense (for those of you who thought I should never cut it), his hair was in his eyes and under his chin. Patrick was ok with the whole haircut idea till we hit the ticklish spot behind his ears. Finally, though, he fell asleep and we were able to finish. It’s a nice short cut.. but we hope that means it can grow for a while again before it needs another cut.

First ER visit
Last Saturday night, I noticed some bleeding under the dressing for Patrick’s central line. The line had shifted and, on closer inspection, we found that it had been pulled. It didn’t pull out, but was far enough to worry us. So – we got to make our first trip to the ER.

We were probably quite the sight there because, unlike the other families, we weren’t panicked. Central line issues are just part of life with Patrick. We’ve been planning and practicing for this trip for a while.

We arrived at 10:30 p.m. and had a bit of a wait in the waiting room because we were definitely not the most urgent case there. They took some x-rays to see the position of the line and about 1 a.m. the surgeon who placed Patrick’s line came into the room. He had been called in for an emergency appendectomy, and stopped in to see Patrick while he was there. He looked at it and said that the line was in a good position and he didn’t think it needed to be replaced on an emergency basis. Instead, we were to put antibacterial ointment on it twice a day to prevent infection, which meant lots of dressing changes, and then get a second opinion on Monday.

We were amazed, but happy, and after teaching an E.R. nurse proper technique for dressing change (yes, us teaching her), we were sent home. We got home at 3:30 a.m., connected Patrick’s feeding tube, and slept in till 11:30 a.m.

First outpatient surgery
So that brings us to Monday. About a month and a half ago we started the battle of the granulation tissue. Patrick had a patch of it next to his stoma that just kept growing back, no matter what we did. We learned to use silver nitrate to treat it, but it just kept coming back. So – we decided that maybe it was doing no harm and we’d leave it as it was.

No sooner had we made that decision than I discovered that his g-tube was surrounded by granulation tissue. A visit with the nurse practitioner in the GI clinic taught me better technique for nitrate treatments and after 10 miserable days of treatments, his G-tube site was clear of it. However, the spot by his stoma was starting to make it hard to keep a bag on and his skin was getting sorer by the day. I tried my newly practiced skills, but the tissue just kept coming back

So, we called and scheduled an appointment to have it electrocauterized. This is a minor procedure, but it’s painful and so they put babies to under so they don’t have to suffer through it. The surgeon we saw in the E.R. told us to as for follow-up at our appointment on Monday. It was still looking sore and red and swollen and the surgeon didn’t like the look of it, so he decided it was best to change the central line.

This means that they took it out of one vein and put it into another one, coming out in a different place on his chest. Again, this is something we’d been warned about, so it wasn’t a complete shock. However, we were a bit nervous and, after an already long weekend, quite tired.

The surgery went well. Patrick woke up and was able to come off the ventilator in no time at all. He was, as always, a favorite with the nurses in post-op. Brian got to reconnect his TPN in post-op, which was kind of funny to do. Our nurse was fascinated with the different equipment. We got some curious looks as Brian drew up vitamins with syringes and injected them into the IV bags.

It’s a curious thing to be the old pro parents in the hospital. I often refer to myself as a “hospital mom”. We know the routine. We’re patient with the nurses, doctors, and other staff and, although we are concerned for Patrick, we are not scared or intimidated by our surroundings as we once used to be. It’s kind of odd to feel perfectly at home in a hospital… But makes all of this more bearable.

Patrick was sore and tired for a day and still whimpers if we move his not-quite-healed shoulder the wrong way… But overall he’s back to himself. As for Howie and myself, well, we’re slowly but surely catching up on our sleep and getting back to a normal routine. And preparing for the adventures ahead.

First steps to transplant
And that brings us to the last of the firsts for this entry. We have made the first steps towards transplant evaluation for Patrick. We have appointments for April 27th and 28th at Seattle Children’s Hospital to meet with the surgeon, gastrointerologist and just about anyone else who might have anything at all to do with Patrick’s transplant. Theevalution process is big, long, and very detailed. They want to make sure that Patrick needs and will benefit from a transplant, that he’s healthy enough to have one, and that his home life lends itself to as successful of a recovery as possible. This trip is the first step in that process, and we are excited to go and learn and start building relationships there.

Patrick still has a long way to grow. He’s almost halfway to the 10 kilo weight goal. (He weighs 10 lbs 11 oz.), and so we know this visit won’t end with him on a list. But it’s a start and a step in the right direction.

And so, those are the firsts we have to report for the time being. We’re looking forward to continuing to see him learn and grow. He is so good at using his hands now! And has just started to discover that he has feet. His spirit grows by leaps and bounds every day. Most of all, he amazes us with his incredible patience and optimism.