Transplant Pre-evaluation: Day 2


Monday morning I woke up at around 6 a.m. to try to get everything packed and ready for a day at the hospital. Our first appointment of the morning was at 9 a.m. and we needed to arrive early enough to check in and find our way around.Our transplant nurse, Sandy Mitchell, met us in the “Whale” (outpatient) wing of Seattle Children’s Hospital. We had to stop and get badges at a security desk at the entrance identifying us as Patrick’s parents. Then we went to a registration desk in the middle of the main floor and they got us checked in. They gave us a “purple pass” to use to check in for the rest of our clinic visits that day so we wouldn’t have to wait in line again to check in, and then gave us a pager and sent us off to the cardiology waiting area.


Patrick’s first appointment was for an EKG. They stuck probes all over his chest… so many that you could barely find a patch of visible skin and then in just a few minutes had a printout of the electrical readings of his heart. The funniest thing about all this is that we did it all with him still in his stroller. Hooray for whoever at Carter’s thought up the snap front bodysuit. Best hospital clothes every dreamed up for a baby!

Next Patrick had an echocardiogram. This is an ultrasound of his heart and it took about an hour to do. We undressed him this time and I laid on the table with him and kept him calm and entertained. Between Baby Einsteins on the TV and the cool black and white images on the monitor, though, he didn’t need my attention much. Funny the opportunities that life presents you, though. I finally got the chance to see my baby’s heartbeat on ultrasound!

After lunch, we headed upstairs and met with the nutritionist for the intestinal transplant program. She looked over Patrick’s most recent lab results, his output history, and his current diet and then she made suggestions, which I’ll be blogging about in a future post. It was great to hear he say that she was happy with how Patrick’s care is being managed and that she fully trusts our dieticians here.

Our next appointment was probably the most brutal of the day. We spent 2 hours with the transplant coordinator and she went over all aspects of the transplant. She explained what they’re looking for in a transplant patient and how the approval process works. (Basically, after the workup the transplant team meets together and decides if Patrick is a good candidate for transplant and if they’re willing to list him, or if there might be other things they can do to care for him w/o a transplant). Then she explained that Patrick, if accepted, would be followed closely by the team in Seattle and would probably make regular visits back to Seattle pre-transplant so they can monitor his care.

She explained a bit about what to expect when an organ became available. We learned that he will have 6-8 hours max to get to Seattle once we get a call saying that there is a donor organ. He’ll need to be healthy at the time, of course. The surgery will be a very long one, followed by a hospital stay of at least a month.

Most of the talk was about what to expect after transplant, though. First of all, to prevent rejection of the new intestine, his immune system will be surpressed. Because of the risk of rejection and other complications, we’ll need to live close to the hospital so that he can have regular follow-up visits, including biopsies to check for rejection. He’ll be on immunosuppressants for the rest of his life, but in that first year, at least, his immune system will be incredibly weak. We’ll have to avoid public places as much as possible and avoid exposure to any kind of illness, bacteria, or other source of bugs that can cause him problems.. His diet will be limited, and at first he’ll probably still be on TPN as he learns to eat and eventually to get enough nutrition that way, but they’ll work to slowly wean him off of that. He’ll be at risk for a lot of big scary health problems, including rejection, infection, and a certain type of cancer that can develop when the immune system is supressed. Here’s more information about the risks and ramifications of life after transplant.

Our last scheduled appointment was with pre-anesthesiology, which was really a simple one, considering that Patrick’s had surgeries before. They we headed upstairs because they’d ordered a bunch of lab test. We pushed to have labs drawn through his broviac, but they still wanted us to ask at the lab for it to be drawn by just sticking a vein. They told us to ask for their best tech, which we did. He took one look at the list of tests and then at Patrick and said that he didn’t feel comfortable drawing that much blood from a kid this size, especially through a needle, when he has a broviac line. So, he took a little blood for some blood typing, gave us a bag to collect a urine sample and sent us on our way.

We were pretty overwhelmed that day and avoided giving updates because it was so much information to process ourselves. Instead, we went out to dinner and Patrick made our evening for us.

While we were eating, I looked over and noticed that Patrick was imitating my expressions while I ate. He was making chewing faces and licking his lips when I did. Then he started to blow bubbles and, well, I decided to blow bubbles back at him. The next thing we knew, he’d learned to blow raspberries and would happily spit back at us whenever we spit at him. It was a fun game to play for the rest of the evening and week, and definitely helped to lighten the load of a HUGE day.

Transplant Pre-evaluation: Day 1


So the first big question about getting Patrick to Seattle was transportation. With current airport security, how do you get a kid who is connected to running IV fluids through security? And how do you go about transporting a week’s supply of TPN? It has to be kept at a certain temperature and, well, there is just a lot of it. Hauling a cooler and coordinating tubing through the airport just didn’t sound like much fun to us, but neither did dealing with any lost luggage.

So I did tons of research: called the TSA, read every page in the Delta website about baggage, and read websites written by other TPN patients. Finally, I asked the pharmacy if they could ship the TPN ahead of us. Turns out, that’s a free service that they provide. And our wonderful friends Lindy & Kelly helped us find a place in Seattle to ship to and then picked up the shipment and kept it in their fridge until we could get there.

So we were able to travel with just 2 day’s worth of medical supplies in our carryon… which was still enough to fill an entire carry-on sized suitcase, but probably saved us TONS of grief. Patrick’s luggage was by far the biggest and we were probably quite the sight making our way around with Howie hauling 3 rolling suitcases behind him and his carry-on and me with a stroller, a duffel bag, and a diaper bag.

We were surprised by how smoothly things went at security. In Salt Lake a TSA worker came up to us when she saw us getting our stuff ready to go through X-ray. I explained to her Patrick’s IV’s and showed her my suitcase full of medical equipment, including IV solutions and syringes full of saline and heparin. She took over right away. Patrick and I went through the metal detector and (of course) set it off because of his pumps. Then they took us to the little security station and ran their little tests on his medicines. When they were all done, they patted Patrick down and then did a wand/hand search of me. Then they thanked us for keeping things organized and making them easy and sent us on our way.

We were allowed to board the plane first because we were travelling with an infant, which was different but nice, especially since we needed to get his stuff settled so we could get to anything he needed during the flight.

We booked him a seat, not to sit in, but to give us some extra space. His backpack rode there buckled in and Patrick started the flight in his daddy’s arms. He played and he slept and he flashed his bright eyes and smile at the flight attendants and the passengers around us. He was by far the best behaved child on the flight! Whimpered only when he was hungry.

Finally we landed and took our crazy little caravan to the rental car company and checked in at our hotel. We took a much needed nap before heading over to visit Kelly and pick up the TPN shipment.

The day of travel was much smoother than I could have ever expected! Which turns out to be a good thing, as we had a very long week ahead of us

Transplant Pre-evaluation: Introduction

We’re going to have a little series of posts here about Patrick’s transplant pre-evaluation at Seattle Children’s Hospital. I decided to break this up into a series not to extend the suspense for you, but to increase the odds that I would be able to finish a post in a single sitting.

So, we’ll start with an introduction. As you know, Patrick has extreme short gut syndrome. Without intestines, he is completely dependent on TPN for nutrition. And the lipids in the TPN are notorious for damaging the liver. If he had more intestine, there would be the option of adapting Patrick’s intestine, but with so little, he needs to have a transplant before his liver fails if he is going to survive.

Our GI in Utah recommended that we go to Seattle Children’s Hospital where they have a relatively new intestinal transplant program being started by some of the most experienced doctors in this field in the country. So, after some prayer and some research we requested a referral and last week we flew out for an evaluation.

There are several purposes for a pre-evaluation for transplant:
1) It gives us a chance to meet the team and see the facility and decide if we want to pursue treatment there.
2) The doctors can see the patient and have tests done to give them first hand knowledge of the case so they can recommend a plan of action, including deciding if transplant is the only option for the patient.
3) They do lots of tests that check to make sure Patrick is healthy enough for a major surgery, to detect any unknown health problems, and to gather the information needed to match him with a donor.
4) They look at our family’s ability to maintain Patrick’s care financially, emotionally, and physically both before, during, and after transplant.

Once the workup is complete, Patrick’s case is presented to a review board and a decision is made as to whether or not he is a good transplant candidate. When the decision is made, they’ll notify us.

So that’s the purpose of the pre-evaluation. The next few posts will describe our experience and what we learned.

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.

Sealing and blessing

As of 4:10 p.m. on February 13th, Patrick is officially a member of our eternal family!

We started out the weekend’s events with a little bit of humbling. Howie took the day off to help get the house ready and I was going nuts trying to take care of every little detail from ironing temple clothes to prepping food for the open house. But, a flat tire on the freeway ay 10:30 the night before we went to the temple was a good pull back into reality. Changing the tire was easy, but it revealed other bigger problems and we made it home on a prayer and half a rotor on the front passenger side. Boy did my priorities realign quickly, especially as I watched our car be taken away on a tow truck, just trusting that we’d get through the weekend all right anyway.

Howie’s family helped get the church set up for us to go the temple, and then his mom made it here just on time to watch Patrick while we got dressed to go. She drove us to the temple and we tried took a few pictures. Although it was sunny, the wind was bitter cold and Patrick was NOT happy so we didn’t stay too long.
My mom and dad met us at the temple. Mom was there to take care of Patrick in the nursery. (Including dressing him and reconnecting his IV’s). We left him there in capable hands and then went off to get dressed in white.

We met the sealer (this is the official title for the man who performs a sealing ceremony in the temple). Turns out he had been the community doctor in the town where my family grew up, so he knew my grandparents and dad, and some of my mom’s family, too.

They kept trying to start early… But my grandpa and some of my friends hadn’t made it there yet.. So we just made everyone wait. Our friend Tifanie was so excited that she couldn’t contain herself and ran over and gave me a hug… making everyone cry.

Finally everyone all of the guests had arrived and they went and got the man of the hour. My mom brought him in, dressed in a white tuxedo and wrapped in a white afghan she made just for the occasion. Brian and I knelt across the altar from each other, holding hands, and Brian’s mom brought Patrick and laid his little hand on ours. At first, he was a bit fussy, but we turned him around so his right hand would be on ours, and he caught my eye, and he settled down immediately. We watched each other’s eyes the whole time.

A sealing for a child is quite short… just a few lines said by the sealer that bind the child to his or her parents (in the eternal record) and then promise special blessings. Patrick seemed to soak up the entire experience, and then, completely content, went right to sleep as soon as it was over and I had him in my arms.

We celebrated and welcomed him into the family that evening with an open house at the church. I went smoothly (thanks in part to awesome family who helped with the food prep, set up, and clean up). There were enough people there that I couldn’t quite make it to talk to them all. Finally we wrapped up, cleaned up, and got home COMPLETELY exhausted! And with way, way, WAY too many leftovers. I think next open house I’m going with punch and cookies.

Saturday we got to recoup a bit as we visited with family, which was nice because we knew Sunday would be another big day. Patrick got to know his cousins and aunts and uncles a bit better.

Sunday morning Patrick could barely sleep. After his morning feeding, I sat in his room holding him and he just kept waking up and grinning at me. I swear he knew what was going on that day.

Because he had us up early, we were able to take our time getting ready. He spent a little time cuddled with his Daddy in the bed, and then we got him dressed and ready for church. Our ward has classes first, followed by sacrament meeting, so I went off to Primary with the children and Patrick went with Brian to his classes.

We snuck out a bit early to change Patrick into his white tux… and luck of all luck… found that his ostomy bag had started to leak. Luckily, by now Howie and I are a pretty smooth team and we were able to pull of a pretty amazing quick change in one of the classrooms and still make it to the chapel on time.

When the time came, Brian took Patrick to the front of the chapel. Brian is an Elder in our church, and his brothers, some of my brothers, our fathers, and my grandfather are also priesthood holders, and therefore could help with the ordinance. They surrounded Patrick, each with one hand holding him, and then Brian performed the blessing.

In a baby blessing, the child is given a name and then given personalized blessings. Among other things I remember from the blessing, Patrick was reminded of the love that brought him into our family – both our love and the love of his birthfamily. He blessed him with strength to face the difficult medical journey ahead. He reminded him that he was a child of miracles.

When they came back to sit beside me, Patrick was just glowing. His daddy held him and I could see the love that they had for each other. I also knew, as I looked at Patrick, that he understood all that had gone over the weekend and was happy about it. I really believe that, although he was adopted, the Lord promised He would waste no time in making sure that Patrick received these two very important ordinances.

Since then, well, I can’t quite get enough of my son. I don’t know what the future hold, though I’m sure there are rough times ahead. But I do know that I was blessed with a very special gift and a very important calling in this life when I was given the opportunity to be Patrick’s mom. And I will never forget the day he was sealed a part of our family forever.

3 months old

Patrick is 3 months old now and is starting to look and act much more like a little boy than just a baby. Oh sure he still wakes us up at night. And I can still tuck him under my arm and carry him around like he weighs nothing (of course, he’s still very small). But he’s growing (8 lbs 13 oz) reaching that fun stage my family calls “interactive baby”.

First of all, he’s started to give out smiles all the more willingly. I can bet on the fact that I’ll get a big grin whenever he wakes up and realizes I’m holding him. This past week, he’s also started to react more when I play with him. He’ll laugh and talk when I sing him songs or talk to him, and I can get him outright chuckling if I pretend to eat his cheek or tummy. He also is starting to take an interest in peek-a-boo. Of course, this is all the more incentive for me to sit and do nothing for hours besides just trying to get smiles from Patrick.

He’s taken a new interest in his toys. He loves to sit in the bumbo seat that Howie’s co-workers gave him. He’s actually learning to hold things so his gym, rattle, rings, etc. are suddenly much more interesting.

Course, he’s also learned to hold onto his central line… which is a bit more of a problem. Don’t need him grabbing that and giving it a yank. Thankfully, my mother in law modified a bunch of onesies to a design I came up with that send the line out the side instead of being right in Patrick’s reach and those are helping.He’s sleeping through more of the night and spending more of his days awake. Part of this may be that he’s finally feeling better. (His anemia is resolving himself and we are starting to get a hold on keeping him hydrated again). But I think part is just that he’s growing up.

Daddy went on his first business trip since Patrick came home this week. Thanks to all the friends and family who were there to watch over us, we made it through just fine. And now that Howie’s home, Patrick is just eating up the daddy time.

Perhaps the best news is that it was all pretty good news when we went to see Patrick’s gastroenterologist this week. If you don’t know, the past couple of weeks have been a bit scary as we almost had to take Patrick to the ER a couple of times. First, we suspected he might be developing a fever. Second, out of nowhere his stool output went through the roof and he walked a line with dehydration that we had to watch VERY closely. (Patrick doesn’t have the portion of intestine that reabsorbs fluids, so diarrhea will dehydrate him much faster than other children).

As so often has happened for us, though, the Lord was watching over Patrick. The right doctors were on call at the right times and they were able to teach us how to take care of things at home rather than taking Patrick into the ER. We had blood cultures drawn by his home nurse. He was put on an oral antibiotic to help fight any bacterial overgrowth that might be there. (With so little intestine, Patrick’s body can’t get rid of the “beneficial bacteria” that live there the way the rest of us can and he can get infections in his intestines that could cause diarrhea or worse.) He had his 2 month (yes, I know it was late) checkup with his pediatrician on just the right day so they could do labs to check for other stomach bugs.

And, in the end, the great news is that there is no sign of anything malicious that’s causing the change in output. We monitored him closely and gave IV replacement fluids at home so he wouldn’t get dehydrated. He got pedialyte instead of formula, and then watered down formula for about a week and a half. This week we were finally able to start giving him full strength formula in very small amounts (about a third of what he was getting, before… he’s up to a teaspoon now). And so far, so good. In fact, we’re on the other side of things right now where he’s not losing enough fluids… a sign that we need to increase his feeds. (We want him to need some replacement fluids because that’s where he gets his electrolytes).

So – if our emergency watch level were on the same scale as homeland security, we’ve backed down from red (severe) to blue (guarded). I’m getting to spend more time being mommy and less time being nurse.

I’m so grateful that Heavenly Father answers prayers. And I’m grateful for priesthood power in our home. Brian is an elder in our church and was able to give Patrick a blessing of healing this week. And really, the fact that Patrick is still home with us, and feeling happy and healthy, is nothing short of miraculous.
Speaking of miraculous, (as this blog post reaches an eternity in length), just a reminder that Patrick will be sealed to us in the Jordan River LDS Temple on February 13th and we’ll be having an open house to welcome him into the family that same day. Any of you who are in the area and would like to celebrate with us are invited. For those who are out of town, we’ll try to be quick in posting pictures, thoughts, and memories so you can share in the day with us.

Button, button, he’s got a button

We finally were able to trade in that long, awkward g-tube that Patrick liked to get caught in his toes. On the 13th, Patrick’s GI replaced it with a mic-key button. This is small port with a tiny tube that goes directly into his stomach. We can snap a tube into the button to use for feeding or any other needed access to his stomach. But, when it’s not in use, he has only the much smaller button to worry about.

Tummy time, wearing pants, and zerbets are all now much easier.

You may be asking, well do you use his button? What’s it there for? Well, the goal of an “enteral feeding tube” is to put food or medicine directly into Patrick’s stomach without him needing to take it orally. Now, anyone who knows Patrick knows that he loves to eat. However, we’re hoping someday to be able to use this tube to feed him overnight so he can sleep through the night. There’s a pump that will pump formula from an iv-style bag into his stomach at a nice slow rate.

We tried doing just that over the past couple of weeks. However, we’ve learned that Patrick so far doesn’t sleep soundly enough for it to be worth the extra effort. Because food is going directly into his stomach, we were giving him smaller oral feedings during the night… but Patrick didn’t think that was enough and was quite vocal all morning most mornings letting us know he wanted more.

So – right now we’re not using button. However, we’re hoping someday to use it and finally let Patrick sleep a whole night long.

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.