JOY

 When we first learned about Theo's kidney failure, we knew that there would be "ups" and "downs" along the way.  These last few months have definitely been "ups."  If I had to pick one emotion to describe it, I would pick JOY.  Theo is full of it, and so are we.  We live an incredibly good life, and have had an outstanding October and early November.

Roar!

Aside from a nasty cold, which Theo probably picked up from his one and only day in daycare, we have nothing but good news to report.  Theo is growing really well again, has made progress army-crawling (and can move faster than you can imagine), and his throwing up has greatly improved.  The near-zero throwing up during the day is truly a miracle, and one that has made our lives immensely better.

A very quick note of thanks!

For all of you who have prayed for Theo over the last three weeks (and well before that), I want to thank you for your faithfulness.  If you recall, I asked in the last post that you join us to pray for big things to happen in Theo's health for three weeks.   Let me tell you, your prayers have been powerful.

The day after I wrote the blog post, Theo miraculously stopped throwing up during the day.  Completely.  With only a couple of exceptions, Theo has been throw-up free during the day for the last 21 days.  He's still throwing up most mornings in the crib, but we know that God can heal that.  So, we continue to pray.

Transitioning from Baby to Boy

Our little Theo continues his transition from baby to boy.  It's pretty incredible to look back at old pictures and videos and see how much he has developed and progressed.  We're pretty proud of him.  

Once again, I have allowed too much time to lapse between updates.  Life never slows down, does it?  It feels like last week that I was writing an update, when it has been almost two months.  Long story short, Theo is making progress and doing great, but there is still more progress to be made.  Nick and I are still doing really well, too.  We added some new excitement to our lives recently; we closed on a lot in a nearby neighborhood, and will be building a home.  So, we have a lot on our minds right now!

How do you measure a year?

You know those moments; the ones that completely alter the direction of your life. They can be good or bad. Maybe it happened when you got engaged, or the time you found out a family member had died. You might have had one when you got into the college you wanted to attend, or the first time you ate an In-N-Out Burger.


For me with Natalie, the first of those moments was on an early date at an A's game. Natalie impressed me with her vast knowledge of baseball, and even noted that Jeremy Giambi was a proper leadoff hitter because, despite his lack of speed, he had an excellent on base percentage. In truth, his lack of speed will forever haunt me. (Slide Jeremy, slide.)


More recently, one year ago today in fact, Natalie and I had an experience that forever altered the course of our lives. It happened during our 20-week ultrasound, when we saw this...

Time Flies

Special boys and special bears have dressings!

I cannot believe that it is already mid-July.  Where has the time gone?  I apologize that I have been less than stellar at keeping the blog updated.  In our case, no news is usually good news!

Hello, cords!

We've had an excellent month (or more) since I last posted.  Theo is the happiest little guy, and I feel so lucky that he is my son.  I wouldn't trade him for the world.  He is still growing well, and has become a lot stronger in the last month.  He rolls over non-stop now; we can't keep him on his back, no matter how hard we try.  While that is a great sign about how he is developing his gross motor skills, it means that we get a few extra alarms during the night because he is not draining well on his dialysis, and it means that we wake up to find him with cords wrapped all around his body.  Nick may have a heart-attack from the stress of the cords one day soon.

An Update for May

Theo with his dad at Wild Dunes

Since I last wrote, life has been a bit crazy.  But crazy has been good.

Several things have not changed:

1) Theo still has the best dad in the world.
2) We still love Theo's nurses who come during the week.
3) Theo's been showered with love from lots of family visitors.
4) We continue to believe that Theo is an absolute miracle, and that God is working in his life.
5) He keeps growing like a champ, and is still exceeding our expectations in nearly every way.

A few things have changed:

1) As of a little over a week ago, Theo has now spent more days at home than he has in the hospital.  Hooray!
2) Theo rolled over (numerous times!) a few weeks ago.

Rolling over!  He hasn't figured out what to do once he is on his tummy

3) We had a lovely family vacation at Wild Dunes in Isles of Palms over Memorial Day, where Nick officiated a wedding for some friends.  (Talk about a beautiful bride and handsome groom!)  It was a spectacular weekend for us.

California Love... and then Surgery

First time meeting Anna! George, Carly, me, Anna, Hil and Theo

Life seems to be moving very fast these days.  It's hard to believe that it has been almost a full week since we were in California.  What a special trip for me!  Last weekend was the first time that my dad, my twin,  my younger sister, and my brothers-in-law had met Theo outside of the hospital.  I really enjoyed seeing them meet him as a little boy in the real world, and not just a patient.

Theo also met his California cousins for the first time.  He loved to snuggle with Anna (my beautiful, incredibly good 3-week old niece) and to watch George ("the Great," a very active two-year old).  We were able to capture all three on camera in what is one of the funniest, most awesome pictures I have ever seen.  (Seriously, it looks like Theo could body-slam Anna AND George.  What a chunk!)

Mid-month update

Nap time!

Currently, Theo is down for nap #2 of the day, Nick is volunteering at church,  the laundry is running, and the kitchen is clean, so I figured it was time to sit and write a quick update.

Life continues to be wonderful for our little family. But, the last few weeks have been a reminder for me that we are going to have some setbacks along the way.  I think that is par for the course.

March Madness

We love taking walks with Theo

March, in our house, was full of madness.  We love having Theo home.  Our life has been filled with non-stop excitement.

Let me tell you a little bit about Theo:
1) He has a smile that melts my heart.
2) He talks and talks and talks.
3) He loves to wiggle.
4) He is incredibly curious. If I try to hold him close to me, he will have none of it. He wants to be up on my shoulder, examining all that the world has to offer.
5) He has some amazing "dance-offs" with his dad.  For those of you unaccustomed to a dance-off, it involves Nick dancing like a crazy man while Theo quietly watches him.  As soon as Nick is done and points to Theo for his turn, Theo starts wiggling.  Both of the men in my life know how to shake it.

6) Theo loves watching Curious George.  He also loves golf.  Theo watched more of the golf tournament on Sunday than 99.9% of Americans.
7) You would be hard pressed to find a happier baby.
8) If Theo is fussing, he must be hungry.  Otherwise, he pretty much doesn't fuss.  We recently started rice cereal to help cope with the extra hunger.
9) He loves being outdoors.  Watching him look at the trees while we walk through the park is an incredible experience.

Home Sweet Home

So happy at home!

I must admit, I love being a mom to Theo.  I have told people that with him in the NICU, I often felt like a part-time mom.  I love feeling like a full time mom now.  The last 5 days have been absolutely incredible.  We love having Theo home!!!  It feels wonderful to be able to be a family in our own apartment.  Theo has been such a joy since he was born, but especially over the last 5 days.  We are so blessed.

I think that Theo was a bit overstimulated the first day that he was home.  He wore a very serious expression as we showed him around, took him on a short walk, and let him play on his play mat.  It wasn't until we put him on his changing table to change the dressing on his catheter that he really started smiling his big, beautiful, heart-melting smile again.  I think that was the first thing that felt "normal" to him.  Since then, he has adjusted beautifully to life at home.  He smiles all the time, sleeps really well in his own crib in his room, and seems very content.  We are fortunate that he sleeps all night long -- we are indebted to his nurses!

Going home!

After 86 days in the NICU, Theo is scheduled for discharge tomorrow.  We can hardly believe it.  It has been an emotional evening already for the Foy family, as we recount our innumerable blessings over the last 3 months.  We are so thankful that we have such a happy, healthy (relatively speaking) boy who we get to bring home TOMORROW.  Wow.  God is good.

Our team of doctors, nurses, and numerous other support members (from the dietician, to the physical therapist, and our occupational therapist, to name a few) have been amazing.  We have been so impressed by their willingness to help us get home as quickly and uneventfully as possible.  Believe me when I say that this is no small feat for Theo.  We are basically bringing a NICU back to our house, minus the full-time doctors and nurses.

One Step Closer

We have seen lots of smiles this week!  Someone is happy!

There has been very little to report over the last week.  No news, in my book, means good news.  Theo started dialysis again last Tuesday, and has been handling it very well.  His eating has suffered a bit, but that is common for pediatric dialysis patients.  On Monday, Theo transitioned to the Cycler!  We are one step closer to coming home as a result.

Nick and I started training for the Cycler on Monday.  Since dialysis is federally regulated, there is a curriculum that we must be taught.  Our first lesson covered questions such as: what is a kidney? what do kidneys do? what is peritoneal dialysis?  Let me tell you, none of this is new information to us at this point.  The practical, "hands on" training started yesterday; we learned to change the dressing on Theo's catheter (which will be done daily once he is home) and to set-up and disconnect the machine.  Over the next week, we will complete the training and will be ready to do everything on our own.

Dialysis, here we come!

Happy boy!

Theo has been off of dialysis for over 2 weeks now.  Pretty remarkable, considering he had to start dialysis when he was just 8 days old.  We're thankful for the time off of dialysis, since it has given us the ability to be more mobile with Theo and it has given the catheter more time to heal.

There was hope that Theo's lab results would hold in a somewhat "normal" range for a while longer so that we could bring him home and then come back to the hospital once he needed dialysis again.  In fact, the NICU staff had arranged for Nick and me to "room in" with Theo for the weekend, and had planned for a Monday discharge if labs on Wednesday and Friday continued to look good.  By Wednesday, though, the results had started to creep up, and then they moved even higher again on Friday.  As of now, it looks like dialysis will start again tomorrow morning.

Little Miracles

Family photo op: Theo's first field trip outside!

We have had an incredible week.  I wish I could do it justice by putting the week into words, but I cannot.  All I can say is that we have a little miracle, and his name is Theo.

Theo recovered nicely from Wednesday's surgery.  He was not too happy with his nurse or his parents on Wednesday when he was not allowed to eat, but once he was able to get some food in his belly and some morphine to take off the edge, he was a much happier camper.  We had hoped that we could let the new catheter heal for a couple of days after surgery before needing to start dialysis, and so far, our hopes have been greatly exceeded.

A Better Week

Last week was a discouraging one.  Between the infection, the removal of the catheter, and way too many needle sticks to count, Theo had a rough time.  Personally, I was a basket case.  The 49ers even joined the party.  As of yesterday, though, I think we've turned over a new leaf, and I feel refreshed.

Tomorrow (Wednesday) at 11 am, Theo is scheduled for surgery to replace the dialysis catheter.  I met the surgeon and anesthesiologist who will be operating tomorrow, and I am looking forward to having the catheter back in place for dialysis.  If the rest of Theo's NICU stay is uneventful, this should be his final surgery before he comes home.  (But, I am not getting my hopes up!)  We've been fortunate that Theo's renal labs have looked good over the last few days, which has given the nephrologists and surgeons the luxury of waiting so long to replace the catheter while the antibiotics work their magic.  If his labs continue to look good, then Theo will not need to start dialysis right after surgery, either, which will give the catheter more time to heal.

Another Field Trip to the OR

Theo and his dad in the OR prep room

Nick and I are currently sitting in the family waiting room for the OR.  It is amazing how quiet the OR floor is on a Saturday compared to a weekday.  We are the only people here.

The reason for the field trip this time is to remove Theo's tenckhoff (aka dialysis) catheter.  His peritonitis is a recurrence of the same nasty bacteria that he had before.  The recurrence could have been caused by two things: one, the bacteria may not have been adequately treated with the last round of antibiotics, or two, the bacteria may have adhered to the catheter.  In the event that the bacteria has adhered to the catheter, another round of stronger antibiotics may not be effective to eradicate the infection.  As of yesterday afternoon, we thought that we were going to try to treat the infection with 21 days of antibiotics.  However, after involving the Infectious Disease team, the consensus from the nephrologists is to be aggressive in treating the infection.  As a result, it was decided last night that Theo's catheter will be removed today.  He will be treated with antibiotics through an IV for the next couple of days, and then a new catheter will be surgically placed again early next week. During this period of time, Theo will not be on any form of dialysis.

More Fun With Infections

Theo is a trooper.  He spent two days under a warmer following surgery, but has since transitioned back into his crib.  He has endured a sore belly, lack of food, and lots of handling by surgeons, nurses, and doctors without much complaint.  We are so proud of the little guy.

Successful Surgery!

All clean before surgery!  Thanks, dad, for covering him up

Theo's surgeon just came to let us know that the surgery was successful.  He said the PEG tube is already "water tight," but it will be a day or two until we start dialysis and feeds again.  Nick and I are waiting to go and see him now.

We are thankful for another successful surgery!  Now we will pray that it remains water tight, that there is no infection, and no other complications.

Theo's Second Super Hero Surgery

Theo loves when dad rubs his head

Theo has continued to make progress over the last week.  He looks healthy, and acts healthy.  He passed the 9 lb mark at the start of the week, and now weighs 9 lbs 5 oz.  We've passed one milestone: newborn clothes are now too small for Theo!

The upside to throwing up on yourself: naked time!

Progress has been made on the dialysis front, as well.  Theo's dialysis fill volume is now up to 150 ml, and he is now only on dialysis 18 hours per day.  Ideally, the nephrologists like to have 50 ml of dialysate per kilogram of body weight to ensure that the Cycler (the dialysis machine) works properly, which would put Theo's ideal fill volume around 200 ml right now.  For perspective, 200 ml is equivalent to almost 7 ounces.  That's a lot of liquid to put into a 9 lb body!  The Cycler should work well around 40 ml per kilo, though, so we are basically right there.  However, Theo has not started the Cycler yet.  The team is waiting until he has recovered from tomorrow's surgery.

What a difference a day makes!

Thank you for all the extra prayers!  Theo seems to be feeling much better today.  The fever is gone, and all other systems seem to be working better.  He seems a lot more comfortable today and has spent more time awake than any other day in the past two weeks.  So far, there has been no sign that the bacteria caused the fever, which is an answered prayer.

Here is a shot from yesterday.  The IV had to be put in his head, but he did not seem to mind too much.

Now, here is Theo today!  Nick caught a smile on camera.

What a difference a day makes!

The Fight Continues

For those of you praying for Theo, please say an extra prayer for him today.  He came down with a fever overnight, so the doctors are starting him on additional antibiotics to be on the safe side.  That is the cliff notes version.  If you are interested, I'll provide some more context below.

Feeling better = play time!

As I last wrote, Theo developed peritonitis on Monday, December 26th.  The nephrologist started him on antibiotics that same day.  The doctor knew that it would take several days to get the specific bacteria identified, but opted to use two antibiotics in Theo's dialysate that treat approximately 99% of bacteria.  Theo's condition seemed to improve very slightly over the next couple of days, but he was clearly still not feeling well.  He started retaining a lot of fluid, causing him to gain over 1 pound in 2 days.  (Proportionately, that would be like most of us gaining 15-20 pounds of fluid weight in that timeframe.)  He was quite the chunky monkey.