Adios 2011!

Merry Christmas and Happy New Year! <3 Caleb & Lalo

Well I suppose now that the holidays are done, I can't use that as an excuse for not blogging.  I promised myself I would share at least one little update before we wrap up 2011, plus I will share a picture of these two cute distractions.

Things have actually been fairly mellow around here.  Lalito was still throwing up and refluxing even on J feeds.  He has had a few GI tests, but they didn't really give us much in the way of answers - just that he has a small stomach and somewhat slow emptying.  It has basically come down to us trying to figure out how/if we can move forward.  We made the decision to start using the G tube again, so that his feeds are going into his stomach.  So far we have been doing G during the day and J overnight, to minimize the risk of him throwing up in his sleep (really in our sleep is the issue). We have also been including small amounts of blended table food into his diet.  And then we are very, VERY slowly increasing the rate that we are feeding him so that he will get more breaks in the day.  The past week or so he has been ok, still throwing up a handful of times a day and arching a lot, but not absolutely miserable.  We feel like we have a couple of options left to try, and if we don't see any results we will probably start seeking 2nd opinions from other leading east coast hospitals (or further if need be). 

Lalo had also been having some issues with his right shoulder and balance following his surgery this fall.  His therapists thought possibly his shoulder was subluxed or dislocated.  Also, when we were fitting him in a new piece of therapy equipment, they thought he might have a slight difference in the size of his legs or also possibly a hip subluxation.  However, we saw an orthopedic surgeon in the beginning of December and based on his exam and xrays he said Lalo doesn't have any of these issues.  He also didn't see any signs of scoliosis, which can be quite common in cdh kids, as well ase kids who have had strokes.  We also got the all clear from the opthomologist to wait another nine months before coming back.  He does have some issues with his right eye floating a bit, but he wants to just see how the brain rewires to see if it corrects itself.

Lalo is really making some progress with speech.  He has about 10 words and has figured out how to tell us he wants something.  We are very anxious for him to gain some type of mobility.  He can roll, but doesn't often.  I think part of this is that now that he can sit, that is the position we have him in most often.  He can't transition himself between sitting and lying, so we have to decide at any given point what position he's in.  I think it will be so huge for him when he can decide if he wants to be sitting or lying, on one side of the room or the other, kitchen or living room, etc.  He has gotten two pieces of therapy equipment lately - one is a stander that basically straps him in frankenstein-style to put him in the standing position and get him weight bearing on his legs/feet and the other is a gait trainer - that is similar looking to a wheelchair but he stands instead of sits and we can wheel it and help teach him to use his legs to move. The poor guy also has his molars coming in right now.  He loved the wrapping and tissue paper this Christmas the most.  If only gift bags were full of calories...

Caleb is doing wonderful.  He speaks in paragraphs and we can have great conversations with him.  He is growing an inch a night it seems like, I'm not quite sure what happened to my little tiny baby boy.  He is a wonderful eater, often Lo and I exchange the "holy crap - this kid is going to eat us out of house and home one day" glance across the dinner table.  He also convinces us to read about 17 books a night to him ;) He really enjoyed this Christmas season - he loved looking at the lights, was so proud that he got to put the star at the top of our tree, and he nicely tolerated my obsession with Christmas music.  We still have a pile of presents under our tree because he is a dedicated player... he opens one gift and could care less about opening any more because he wants to play with that one for two hours. 

Oh what a year it has been! Plenty of good, but our fair share of bad too.  I think I can definitely say we are looking forward to the new year.  With any luck, I should be headed back to work part-time in the next few weeks and that will be a whole new chapter for us.  We have plenty of resolutions for the new years, but for tonight we are focused on overeating and laughing with some of our good friends and their kiddos. 

May you and your family have a blessed New Year!

MRI Results

Lalo has been doing good since surgery.  Recovery was SO much easier this time.  I think the most painful part of the last 2 weeks has been his two front teeth pushing their way through.  He is still having some issues with throwing up and refluxing, though it seems to have slowly improved a little bit.  The surgeon still wants us to drain his stomach to minimize the throwing up which puts strain on his diaphragm.  We go back in 2 weeks to evaluate again. 

We finally had his MRI on Tuesday and Thursday we went to see the neurosurgeon to discuss the images.  Lalo did great with anesthesia as usual (little ones have to be sedated so they stay still). The breathing tube did help turn his runny nose into a nasty cough, but luckily no ER issues like last time.  The visit with the neurosurgeon went great - no new issues!  His view is that the digestion issues Lalo has are not neurological.  He also is confident that Lalo's head is growing appropriately and there are no issues with plates fusing too early.  The main reason he wanted the MRI was to follow what would happen to the brain physically after such a big injury.  Our understanding was that the left side of the brain would not grow where the injury occurred.  What we didn't realize is that the part that was damaged basically disintegrates.  Instead of damaged brain in that area it basically just becomes a fluid filled space.  This actually makes it a lot easier to visualize what happened to him on the latest MRI images.  Practically all of the left side of Lalo's brain is gone, as well as a few other smaller areas.  The neurosurgeon said in an adult this would be devastating, it would mean absolutely no movement on the right side, as well as no speech.  Lalo has the advantage of time and neural plasticity though, and we will watch to see how Lalo is able to wire what is left of his brain to take over those functions. 

You may think an appointment with your son's neurosurgeon who shows you pictures of approximately 50% of his brain that remains would be depressing, but quite the opposite.  Take a look at the video I took last week and tell me it doesn't make you grin ear to ear...

I promise to put up some recent pic soon, I just wanted to share the good news first. 

Home sweet home

We are home as of last night.  Lalito did a great job tolerating his feeds as they switched him from IV fluids to formula through his j-tube.  His pain was pretty well controlled first with IV morphine and then oxycodone after he was up to full feeds.  Yesterday around noon they pulled out the chest tube, which made him a lot happier and I could finally pick him up.  The chest tube is a relatively small tube put in during surgery between the ribs and into the lung area to drain any excess air, fluid, or blood - it is G-R-O-S-S! Plus, I can't imagine it's very comfortable to have in, so needless to say I was very excited for it to come out.  Unfortunately, they weren't able to arrange scheduling our MRI until Friday at the earliest.  Since Lalo was up to full feeds at this point, his pain was controlled and he was off of the IV, we just needed a good xray and we got to leave.  It was a pretty quick recovery stay, but our surgeon is all about getting him out of the hospital full of sick kids.  The last thing Lalo needs is to catch something while he is at the hospital. 

We were all thrilled to be back home last night.  Both boys slept wonderfully and so did we.  Since Lalo had been doing great with not throwing up since surgery and very minimally even since our ER visit last week, we decided to try keeping his g-tube clamped (before we were basically letting his stomach emptying out through the tube to minimize him throwing up the normal, more painful way).  Unfortunately, he threw up 3 different times today and since the surgeon really doesn't want him throwing up, we unclamped it again. He again had some bile drainage and threw up one more time.  With any luck, this passes as his system recovers from surgery.  Overall Lalo is very happy and not in very much pain. 

CDH Repair #3

Third times the charm, right?  Surgery went very well this morning.  The anesthesiologist scared us with the possibility of putting in another central line if they couldn't the IV access they needed, but they were able to get two peripheral lines and one arterial line.  The surgeon was able to do the repair laparoscopically, which is awesome and should hopefully make our recovery hospital stay a little shorter.  He was very excited when he came out of the OR and even brought pictures and told us he will have the video for us next week!  He said the video is what he will be showing at his international lectures over the next year because of how great this repair went.  The diaphragm itself had ripped away from the gortex patch and that allowed the loop of bowel into his chest.  He was able to use a type of stitching to reattach the diaphragm to an additional piece of gortex that will give Lalo more room to grow.  The way that it was ripped away makes the surgeon think it was the retching that caused the reherniation.  Possibly when Lalo had the stomach bug in July, his vomiting/retching caused it to start to break away and he has never quite been back to how he was in those two good months. 

He is very confident this repair will stick for a long time if we can go about a month with no vomiting.  That ought to give him a good amount of time to heal.  He wants this to work so if Lalo starts any funny business before then, he won't hesitate to act on it.  Until then we will also have to keep with feeds into the jejunum.  Statistically, at this age and again at around 9 or 10 is when you go through a certain growth spurt that makes your odds of reherniating higher.  The surgeon also gave us lots of reminders that by the time Lalo is 5 or 6 this phase of life will just be a bad memory. The biggest risks to him now is each time we go into that OR, so his goal for us is to go at least a few years before anything else surgical (we could also do with never!).

Lalito was allowed to go to "the floor" after surgery instead of the picu!  This is wonderful because it says that he really didn't give them any scares in the OR, and it is a much more relaxed place to allow for healing (not to mention there is a fold out chair that I can sleep on).  He still has his 2 IVs and a chest tube.  He is on a morphine drip, and overall seems pretty comfortable.  Unfortunately, he hasn't really peed since surgery so they are getting ready to do a foley catheter - poor guy!  The surgeon is also keeping a close eye on him for the next few days for any bowel issues as a result of moving them back into his abdomen.  Any problems with that would send us back to the OR in a heartbeat.  Today they will do 1/2 pedialyte through his j-tube and 1/2 IV fluids, and hopefully over the next day or so work our way back to full feeds.

Thank you all for your prayers.  We have once again been very blessed and our warrior has stayed very strong.

Family pictures!

Well if there's one good thing about sitting around the OR waiting room all morning trying to distract myself, it's that I can finally post some pictures.  Here are the professional pictures we had taken to celebrate our beautiful family.  There are so many wonderful ones that it is hard to pick my favorite. 

It's back...

The diaphragmatic hernia that is... The ct scan last night showed there is definitely a loop of bowel in his chest. There is no bowel obstruction anymore though so that is very good.

According to our surgeon the risk of a bowel obstruction goes way up for two years following any abdominal surgery. This was a partial block so food was getting by, but it was having a really hard time doing so and could very well have been causing Lalo's recent problems. Why did it go away? Sometimes they can treat a bowel obstruction by decompressing the stomach and giving the intestines rest. Essentially we were already decompressing his stomach bc we have been draining his gtube constantly so he can throw up out of that and be more comfortable. It just so happened to fix itself sometime during the morning yesterday. It's funny because the GI and surgeon went back and forth on admitting us the night before and I think both were really concerned that they should have. If they had, Lalo probably would have had surgery by the time it cleared itself. God has a way of timing things just right!

The ct scan last night showed he reherniated. We had seen this slightly in mid-September on xray, but it was questionable as to whether it was actually the hernia or the patch used to repair it. Well it is bigger now and clear that it is definitely the loop of bowel coming through where the patch ripped away. It is possible that the obstruction is related to the hernia, but also possible that they are completely unrelated. Despite the fact that it doesn't seem to be causing Lalo much distress (except maybe the vomiting), it needs to be repaired. The plan right now is to send us home today if Lalo can tolerate feeds and then we will come back for surgery Monday. Our surgeon is hopeful that it can all be done laparoscopically. The MRI will have to wait until after surgery because the anesthesiologists won't risk sedating him for it with the bowel in his chest. So hopefully that is all you will hear from us until Monday! We are hoping for a quiet weekend to get us through this past week and next week.

Sent from my iPhone

The quick rundown

So Lalo's issues have continued. 2 weeks ago today he got a GJ-tube. He did fine with that procedure for the most part. That night we did end up calling 911 and taking an ambulance to the ER bc he was having trouble breathing. It turned out to be croup from being intubated that day. A little excitement, but everything was quickly under control.

Unfortunately though, he continued vomiting. No more milk, but lots and lots of stomach bile and spit. He has been in a lot of pain and just generally uncomfortable. We followed up with our GI dr yesterday and he was concerned that there was something blocking the tube itself. He sent us directly for another upper GI study, where they found a partial obstruction in his small bowel. After much discussion with the GI doctor and the surgeon last night it was decided we would come to the hospital and have surgery soon to fix the obstruction as it can be very dangerous.

By some strange turn of events Lalo was an extremely happy baby once we got to the ER this morning and stopped draining bile. The xray wasn't super concerning and he doesn't seem sick, so now there are no immediate plans for surgery. Instead, we are admitted so they can watch how he does with feeds and run tests. Tonight they will do a CT scan of his abdomen and chest to see what is going on. Tomorrow, we will try to get an MRI of his head. One thing they did notice in the xray is that the possible reherniation looks a little more significant than at the last xray. At this point, that doesn't necessarily mean surgery, but it is a possibility.

We probably won't know anything else until tomorrow, but are hoping this stay brings some answers!

Sent from my iPhone

Ignored Post

I have been ignoring this post for a very.  long.  time.  I was hoping maybe if I didn't write about it, it would go away, but no such luck.  Poor Lalito is back to his old throwing up ways.   Burp clothes are back in heavy rotation.  Conversations with doctors are frequent.  Even Caleb has started threatening to throw up in fear that Lalo might get more attention than him.  I'm almost 100% positive this is my punishment for getting a little too cocky and buying a new rug this summer, but in my defense it was only $20 at Target and I thought we were over this!

It all started around mid-August.  We felt like Lalo was doing great and finally pretty much over that stomach bug.  He was refluxing a little more than he was back in June/early July and would spit up maybe once every day or 2.  No big deal, so we were anxious to compress his feeds a little further and move forward on the whole thing.  We worked with the nutritionist at our GI dr's office and started giving Lalo more overnight and less during the day with several breaks 2 hr breaks.  Very quickly Lalo started throwing up more, maybe 3-4x/day.  I think we made it less than a week before we jumped ship and went back to continuous, thinking that would bring us back to where we were.  Unfortunately, it didn't help and Lalo was still throwing up just as much, if not more. 

We were getting ready to head to the beach for a week, and with each day we were more and more nervous that something was wrong.  The GI doctor agreed that something wasn't right and decided we needed an upper GI study to give us more information.  Easier said than done, it took a while to get scheduled and then the first available appointment was right in the middle of our planned trip.  We didn't know what to do and were getting super frustrated, so that Saturday morning we got xrays to make sure Lalo didn't reherniate.  The xrays came back okay, so we decided it was safe to head to the beach and planned the upper GI for the week after.  The beach was fantastic (other than the rotating burp clothes), but I'll save those details and pictures for another time. 

The upper GI was long and frustrating.  Long story short, the study showed that it appears there is something above his diaphragm, aka possibly reherniated.  I texted the surgeon and since he was at the hospital at the time he came down to review the results with the radiology doctors.  In the end they decided that they can't be sure whether this is an actual reherniation and there is bowel in his chest or if it is the patch they used for the last repair that is kind of folded upwards.  Either way, the surgeon was not convinced that the small piece of what they are seeing could be causing all of Lalo's current trouble.  He was not anxious to rush Lalo into any surgery without having a better idea of what was going on.  We were happy with that since it was the day before Lalo's birthday and we wanted to be home for it!  The surgeon told us to come back in two weeks so we could do another set of xrays, gave us some warning signs to watch out for and said to keep in touch with any changes. 

Well the following week was just awful.  Lalo had at this point started waking once or twice a night, throwing up and inconsolable for up to an hour at a time.  His daytime naps were also being constantly cut short because he would wake up screaming until he threw up.  One of these nights he also had a fever, so we pretty much felt like we would be taking him to Hopkins at any moment.  We texted and talked to the surgeon several times.  He had us get xrays while we were at another appointment at JH.  Luckily (?) they didn't look any worse than before but that still didn't tell us what was wrong.  At this point Lalo was throwing up 10-15x/day and almost constantly showing signs of reflux (arching, grimacing, shrieking) in between.  It was clear to us that he was in almost continous pain :( The surgeon said he would discuss with GI doctor and come up with a game plan and when we got to the point where we couldn't handle it anymore we should bring Lalo into the ER and they would admit him until we could figure things out.  If it weren't for Lalo's birthday party last weekend, we would have taken him at several different points.

Luckily, we toughed things out and brought Lalo in to see the surgeon this past Tuesday.  Lalo did his best to make me look like a fool by laughing, smiling, and playing games while there.  Of course he did not cough or vomit once! The surgeon said many times this is not an OR baby! Lalito was kind enough to hold his projectile throw up until the second we pulled into our driveway.  But they surgeon did give us our game plan.  This coming week Lalo will get a GJ tube placed again.  This is the one that goes past the stomach directly into the small intestine.  This will be done on Wednesday under anethesia.  They will give the GJ tube a 2 week trial.  If he does well with it, it is probably his pylorus (the muscle between the stomach & small intestine) that is causing him problems.  If he continues to vomit with it, it may be either the hernia/patch issue or that there is a neurological cause for it (we personally don't think that's the case).  Regardless, we will be looking at another surgery shortly after that.  It's dissapointing, but at this point all we want is for Lalo to be more comfortable (and perhaps not be attached to a bookbag 24 hr/day and maybe even eat a little something by mouth). 

We also had Lalo's 12 mo. old well visit right after his birthday.  Overall, Lalo did well - good weight & height and his lungs sound wonderful.  However, we did encounter one new problem.  Lalo's head circumfrence went down from his last visit.  When we had the appointment with the neurosurgeon this summer, he had suggested a MRI.  The pediatrician pushed for this to be sooner rather than later, since this could be an indication that bones are fusing too early and causing growth issues.  The neurosurgeon was not too concerned and wants us to resolve Lalo's current health issues.  So we'll see what comes with this.  If we get admitted at any point, we will try to push to get this done, so we can either put it behind us or have an idea of whether will need yet another surgery. 

Wish us luck this week!  I'm not exactly sure what we're hoping for, but some answers would be wonderful.

We love blood donors!

Today is a very special day for our family!  Lalo's work is holding a blood drive for their employees today in honor of little Lalo at their DC/MD/VA offices.  Not only that, but when they announced the blood drive to all of the employees in the region, they also shared what CDH (Congenital Diaphragmatic Hernia) is and some of the statistics that go along with this birth defect.  To raise even more awareness, they are asking employees to wear turquoise today (the color of CDH awareness) and handing out CDH awareness ribbons to all those who donate.  One word - AMAZING!  All of this to support little Lalo, our family, a world of CDH survivors & angels, and the many people in need of blood.  Are you teared up yet?  Because we certainly were when Lalo's work let us in on their plans.  Thank you to all of those who arranged this and all who participated.  We are so joyful that our little warrior is being honored in such an amazing way.

With the blood drive, Lalo's birthday last week, and the cooler weather we have had lately, I have been thinking of last year quite a bit.  I looked back on our blog last night to a year ago.  On this day a year ago, Lalo was on his 3rd day of ECMO (heart lung bypass machine).  I shared that as of that morning he was burning through less platelets, but the very next day the ECMO circuit needed to be replaced because the blood was clotting in the tubes.  We were in such a fragile state at that time and still had no idea whether Lalito would survive.  Thanks in part to those blood and platelet donations, we have a smiling, laughing, rolling, and sitting 1 yr old that we get to hug & kiss every day.  If you are able, please consider making a difference in a family's life with a blood donation.

Happy 1st Birthday Lalo!!

Can you believe it?  Our little warrior is 1!!  A year ago we headed up to Baltimore, so unsure of our future, but so ready for our little man to start his fight.  And fight he has! Ventilators, life support, blood transfusions, infections, a stroke, IVs, 6 surgeries, numerous procedures, feeding pumps, reflux from hell, therapy galore...and with all that his smile is contagious and his laughter can fill a room.  We are in constant admiration of him and thank god everyday that he gave us this miracle.  I could go on and on, but this day has me too emotional already!    Here are some pictures of how remarkable Lalo's 1st year has been...

9/15/10 5:39pm - just 8 min after you were born and already lots of tubes

9/15/10 10:31pm - 5 hrs old, more tubes and we finally get to see you

9/25/10 - Day 9 on ECMO

9/29/10 - You decided you were done with ECMO

10/6/10 - Your eyes are open!

10/15/10 - 1 mo. old & moved to the NICU

11/15/10 - 2 mo. old and a smile



12/19/10 - 3 mo. old in your ducky pjs

1/16/11 - 4 mo. old & practicing in your carseat so we can take you home soon!

2/16/11 - 5 mo. old and happy being home

3/15/11 - 6 mo. old, bathtime with Caleb & showing off your button

4/15/11 - 7 mo. old & ready for Easter

5/16/11 - 8 mo. old, just got your GJ tube & we found out you were reherniated :(

6/15/11 - 9 mo. old, tummy time pro 

7/15/11 - 10 mo. old, at the beach, teething on some cantaloupe

8/20/11 - 11 mo. old, loving bedtime books with Caleb

9/9/11 - Almost 1 yr. old & loved his first swing ride

At 1, Lalo is...

- sitting unassisted for longer & longer periods of time.

- ocassionaly clapping (bringing his left hand to his right, but this is huge as it is him recognizing his right side more and more)

- trying to imitate some sounds in the words we say.

- waving hi & bye.

- rolling like crazy and occassionaly rolling to left, which is extremely hard for him and requires a lot more work of his right side. 

- giving kisses shamelessly :)

- watching every move that Caleb makes and laughing and playing when he talks to him.

- trying to pet Basco.

- putting everything in his mouth (except food!)

- kicking and splashing in the bath.

- (had) his first swing ride last week.

- crying when mom or dad walk out of the room.

- helping turn the pages in books when we read.
- working on his 3rd tooth.

We are celebrating tonight with a pumpkin pie I baked this morning in hopes that Lalito will enjoy the whipped cream.  We love you Lalito!  Keep fighting and we can't wait to see all of the wonderful things in store for you!

I promise to catch up on posts soon, as we have a few updates to share.