Last check before his big ride in the ambulance!

Stomach bug :(

Day 103 was the first day that neither Lalo or I made it up to see little Lo. We both were hit very hard by the stomach flu Sunday night. Luckily Caleb only got a minor case of it and little Lo hasn't gotten it at all. Lalo getting this or any other illness would be a big setback so we stayed away all day Monday and I only went for 45 min on Tuesday. We are all feeling much better and just trying to regain our energy.

Lalito continues doing well and has only sporadically gotten sick over the last week. He has been gaining great weight too! Tonight our nurse said he is 13 lbs 4 oz! They continue to gradually wean narcotics - alternating between methadone and valium - and increase his feeds - I believe we are up to 2 hrs at 50 cc's and 1 hr off. He has tolerated everything really well other than a few outfit changes here and there. No luck on the bottle at all, but after all he has been through you can't really blame him.

But the biggest news...Lalo has a move scheduled for tomorrow! He is headed to a subacute care hospital in DC. While it isn't much closer than Hopkins, it is super close to where Lalo sr. works so he should have a lot more time to see him during the week, which is great. It is scary to think about moving because Hopkins is all we ever known for Lalito, but it is also very exciting because it is a big step closer to home! Thank you to all the doctors, nurses, respiratory therapists and everyone else who gave our little man the best and helped us teach him to have the biggest smile. We will miss you but look forward to coming back to show off our cuteness at a later date ;-) so the plan is for Lalo to go tomorrow by ambulance - his first taste of Washington winters!

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Train's coming!

Christmas breakfast

Watching snowflakes

Laughing at dad's stories

Always Jolly!

My first Christmas

Mommy's little deer

Daddy and Lo - Xmas eve

Day of Life 100

At the beginning of rounds each day one of the doctors always introduces Lalo and tells the rest of the team how old he is, usually using the number of days. Christmas eve marks his 100th day of life! Santa has helped us celebrate by bringing us an early present...Lalo has only thrown up once since Sunday (this morning). You can tell he feels SO much better. Several nurses have even said he is an entirely different baby. When Caleb was a baby he was mr smiles and now we have mr smiles take 2.

We are cautiously optimistic that Lalo is over the worst of it GI-wise, but we don't think the road will be bump free. We have compressed his feeds slightly more but the most he gets in an hour is 45 cc's, which is what the last gi study showed as his max. We will slowly compress that more and more as he tolerates it. We are also back on the prevacid as of 2 days ago which he has so far done fine with.

The next step is to get him to take a bottle, which so far we have had zero luck on. He did meet with the swallow study dr this week who ordered a fiberoptic endoscopic evaluation of swallowing (FEES) to look at whether it is safe for him to eat orally. I actually was able to watch as they did it and, aside from the crying, it was incredibly neat to see. Best of all, Lalito did a great job, showed no obvious issues and was able to protect his airway! This means that it is safe to continue trying to introducing small amounts by the bottle (well it's ok by everyone but him). Once he is actually taking small amounts we plan to reevaluate and see if he can take everything by mouth.

We wish everyone a very Merry Christmas! We are looking forward to snuggling Caleb and Lalo as much as possible and celebrating with family and friends.

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Mom and C

Lalito's Christmas tree

Sleeping

Talking with Aunt Fina

Good grip

Darts

Trucks

Christmas tree

Good day

Guess who had a really good day! I think he is on his best behavior because he misses his fave night nurse and wants her to come back from vacation :). I can't specify because I'm pretty sure that might just jinx us, but let's just hope and pray that this trend continues. Also tonight Caleb watched out his window to see fire trucks driving Santa around the neighborhood - looks like he was making sure he knows how to get to everyone's house!

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Sunday

Still hanging out at Hopkins. Realized I haven't done an update since last week, I have been spending every spare minute researching things to help reflux and throwing up (and planning a last minute attack for Christmas shopping). Throwing up and gaining weight continues to be our big issues. Last Sunday they condensed his feeds so that he gets fed for 3 hrs straight, then 1 hr off. They also switched him to a new med and started fortifying his milk to 30 calories per ounce (it is typically about 20 cal). He didn't agree with one of these changes and got a rocky start to the week. But it seems he has gotten a little more used to them now and has stacked away a few days of good weight gain.

We haven't been able to get him to take a bottle. Hopefully this might change as his tummy starts to feel better, but for now all that really matters is reducing his throwing up. Some non-medical things that we are working on to help - infant massage (great for digestion and rehab from the stroke), keeping him at an angle when he is lying down, and trying to get him used to tummy time. If anyone has some good tips, please share. We really don't want to do the surgery, but even more important is for him to have good growth and be comfortable.

Lalo turned 3 months old on wednesday and is starting to become an old man in the nicu. Unfortunately it looks like we will be spending another holiday at Hopkins, but every day we are getting closer to home. We can't wait for the day we are able to have our boys under the same roof.

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IV free as of Friday 12/10/10!!

Staying out of the operating room for now

The upper GI showed that the pylorus seems fine. He was able to take about 45 cc's (ounce and a half) before he refluxed and the stomach muscles/contractions seemed weak. That is not surprising since he has always been on continuos feeds and his stomach hasn't been "worked out". The next step is to put his stomach to the test and start compressing the time his feeds are given instead of just continually giving him small amounts. They may also introduce a new medicine that helps get the stomach muscles to contract. We are hoping and praying that these things help. The surgical fix to severe reflux is not exciting but if he continues not to gain weight or gets pneumonia from aspirating into his lungs it is a very real possibility.

He also had a ct scan done to make sure the plates of his head aren't fusing already. Apparently there was debate over the results, so neurosurgery was called in to evaluate. Their opinion was that the plates are not fusing and that he may need a helmet to help with the shaping. Helmet = fantastic, compared to surgery!

Our goal for the weekend is to convince little Lalo to put on some holiday pounds! Think chunky baby thoughts for us. He is 11 lbs 3 oz as of last night.

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Trying to kick the woman doing his ultrasound

Be on the lookout!!

Santa came to visit Lalo Tuesday night. He slept right thru it!

Meeting

> Sarah and I were able to spend a good day with Lalo yesterday. We arrived to hear OT tried to feed him a bottle and he threw up before they even started, but was successful at taking 10cc the day before! Yay. We were also there for his PT session and helped keep him entertained while he worked on his exercises, including the always loved tummy time :) Little Lo also showed us his newest trick - cooing!!

> Sarah and I were there for our family meeting yesterday. The meeting was very informative regarding Lalo's condition and where he needs to be. Over all he has made great improvement considering all he has been through but is still at a point where he needs lots is support and care, which includes learning how to eat and years of PT and follow up.

> The main thing they are concerned with right now is his throwing up and lack of good weight gain. Lalo has made it to 33 cc of continuous feeds an hour and they have just begun to fortify his milk with extra calories. They will do another upper GI test to try and pinpoint the pylorus or reflux as the issue. A previous test said no reflux, but since we are still experiencing lots of puking they want to try and rule it out. If reflux is not the issue they will suggest surgery to open that muscle and put in a gtube at the same time to get him home. If it is still not clear whether that is the issue we will wait and give more time to let the situation resolve itself before we opt for a gtube placement, most likely transferring to a subacute care hospital in the upcoming weeks. In the meantime, we are going to start challenging his stomach more by transitioning him to bolus feeds (large one time feeds) versus continuos feeds. JHH will start to bottle feed him three times a day, up from only once that was only started this week and give him a few weeks to try to learn to eat on his own before we decide to do a gtube surgery. Lalo will also have a swallow study done to figure out if he it is safe for him to be eating orally (if he can protect his airway, and if he can suck/swallow/breathe at the same time).

> The narcotic weaning schedule puts us at Jan 20th to be finished with narcotics. Regardless of the plans for his weight gain/eating we have decided that at this point we are not yet comfortable to do this weaning at home, but will continue to reevaluate as we progress further.
>
> So for now, our plan is to keep Lalo in the hospital at the very least for a few more weeks. He will have all the tests above and then some to help us form our long term plans. We are getting closer and both of us feel really happy after this meeting. Thank you for all your thoughts and prayers.
>
> Lalo

Ta da!!

Just one of the many reasons why we LOVE our nurses. Thank you Erin!!

Baby it's cold outside

Breakfast with Santa

Picking out our Christmas tree

Looking at a pic of his brother and dog!

Busy week and looking forward

Sorry for the lack of update this week - it has been a busy one. Soon after I last updated they once again lost their peripheral iv line on him and decided not to keep sticking him.  So they switched several of his meds to being given through his feeding tube directly into his tummy and some they just turn off his other drips to run.  They continued going up on feeds (now at 29, the actual goal is 33) and down on his dilaudid (thanks to my pharmacist sister for waiting 20 posts to tell me the spelling was wrong :)) drip (off at 8:30pm last night).  They also stopped giving him TPN, which is his iv nutrition. And early in the week they switched from Zantac to prevacid for his reflux.  Well one of those changes really threw a wrench in our progress because the last 3 days he has had horrible days in terms of throwing up.  Prior to that we had almost 2 weeks where his throwing up was fairly controlled or at least lighter than it had been.  

 

Backing up a bit...Every 2 weeks the attending physician changes and brings their own beliefs and experiences to the table, which is good in some ways and bad in others.  Monday brought a new attending (our 4th in the nicu alone...we have been here too long), who from what we have seen seems more aggressive than the others.  So lots of changes happened this week, we have a baby that is super sensitive to changes, and we can't really pinpoint what dug the hole a little deeper.  On top of this he is not gaining as much weight as they want.  To cloud Lalo's picture a little more his vomiting could be caused by many things - the fact that a cdh baby's digestive system is different because it grows in their chest not their abdomen, that it could be malrotated when it is put back in the abdomen during surgery, as a side effect of one of his numerous medications, or as a symptom of withdrawal, and probably some more that we haven't included. 

 

Early in the week, Tuesday, he had his first really pukey day.  The next day at rounds the conversation went all over the place - at first the attending seemed to be on the side of all babies throw up, so maybe it's not really a problem for him.  Then it went to sending him in for a surgery that would help the throwing up and sending him home on narcotics and we would wean him. The whole conversation upset me because the last we heard the plan was to get him up to full feeds at Hopkins and then send him to a rehab hospital closer to us so he could wean off the narcotics and work on his feeding.  I expressed my concern with the nurse, who had the fellow come talk to me.  The fellow said it was all just theoretical discussions, that babies are almost never sent home to wean from narcotics and she would sit down with the attending to come up with a game plan for Little Lo.  The only real plan for the day was to get another ultrasound of Lalo's pylorus (the muscle that connects the stomach with the small intestine).  When he had his upper GI study they found that the thickness of his pylorus was on the upper end of normal.  This could indicate a condition known as pyloric stenosis, which can be a cause of vomiting in newborns because the muscle is too thick to allow food to easily pass through.  So results of that came back the next day that it was unchanged from before, so no confirmation that it was causing our issue. 

 

After we brainstormed a bit on our own, I even asked the nurse and one of our docs on Thursday wether a GI specialist would be called to consult.  After all, he's seen every other specialist in the hospital.  Both told me we weren't at that point of being concerned yet.  So at rounds on Friday they say we have a game plan.  They talked to the surgeon and he has room early next week to do one or possibly more surgeries - placement of a gtube (a long term feeding tube), opening the pylorus (so it is not so hard for food to pass to the small intestine), and a nissen fundoplication (wrapping stomach around esophagus so you cant throw up)!!  Im pretty sure the entire room was listening to me freak out in response to this.  This was almost completely out of the blue and not the path we thought we were on whatsoever.  The nicu's rationale is that he is no longer a super sick baby and he belongs at home where he can thrive versus still living at the hospital just because he's not gaining weight as he should be, and stuck on a long path of narcotic weaning.  These procedures will help get us home because it is easier to have a gtube than it is to have a feeding tube thru his nose and one of the two other procedures should help with the vomiting.  The surgeon happened to stop by a few minutes after rounds ended and him, the nicu attending, and myself continued this discussion.  Where we ended is that we are having a family meeting on Wednesday with Lalo's medical team to figure out his plan.  We are against these surgeries for multiple reasons - mainly they are surgery!  He has already had 4 surgeries and we know he will need another in a year or so to repair his incision hernia.  But also the nissen sounds very extreme and he has only had 3 shots at taking a bottle (that was the exciting news for this week), how do we know that he will need a long term feeding tube?  The thought of weaning narcotics at home is also completely overwhelming and scary, especially when you add in the factor of him being a puker.  However, there are benefits to having him home - obviously most important is that we can be with him all the time, which would be a complete benefit for him developmentally.  We will ultimately be the ones making the decisions but we have a lot of factors and medical opinions to consider. 

 

Other updates from this week include an awesome looking echo of his heart.  But that did still show a PFO, which we are not sure if that will need to be repaired at some point, but for now looks good.  The attending also did a physical exam of his head this week and is concerned that the plates of his head are growing together quicker than they should be.  From being on ecmo and unable to change positions, one side of his head is pretty flat.  Typically, we would still have a good amount of time to work on correcting this, but I guess if the plates fused prematurely we would have issues.  So at some point this coming week he will have an ultrasound (or perhaps xray or ct scan) to determine if this is an issue. 

 

So congrats if you made it through this super long post.  Despite the puking and lots of discussions at his bedside, Lalo had a good week.  He had visits from his grandma & grandpa Frank, his aunt Ellen and his "aunt" Veronica.  He is smiling so much now and soon enough we hope to kick the iv lines to the curb, which will make life a lot easier.  

 

 

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Happy birthday Basco!!

Big

Little

Flirting with his physical therapist

Dramatic tummy time

Dad and C

Early in the game

You sure have a lot of stories Dad

Dad and Lo chatting

Snuggles

Mom & L

Cheeks

1 IV Pole

We can tell we are making progress because all of Little Lo's meds fit on 1 IV Pole!! Weaning and increasing feeds are our daily goals. We are up to 20 cc's an hour and I think total is 24 or 27. Getting close! He also had a couple of times yesterday where he took his pacifier and he had some fun doing tummy time. We are getting closer to coming off the deloudid which is good because when he's on it we need a peripheral iv in addition to his picc line. Since peripherals are easily lost, poor Lalo has had to get 3 in the last few days - hate that they have to keep sticking him. We have had a great long weekend and both of us have gotten to spend lots of good quality time with our boys and our family.

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Smiling during tummy time

Thanksgiving 2010

What a year to be thankful. We are blessed to have two amazing sons and literally a whole village to help us raise them. I don't think we would have survived this year without the support of our friends and family. They have really done so many things for us so that we could be there for Lalo and Caleb - meals, a place to stay in bmore, grocery shopping, errands, babysitting, dog sitting, gas cards, gift cards, laundry, cleaning, hotel stays, encouragement, and prayers. The list goes on and on. We are also extremely grateful for the doctors, nurses and respiratory therapists that gave Lalo a chance in this world.

Lalo is making good progress. He is up to 19 on his feeds and down to 2.5 on his deloudid. They have also discontinued both diuretics and is still doing fine respiratory-wise. He is now smiling at us lots and focusing his eyes more centered and to the right (his focus was pretty much 100% to the left for awhile). We spend lots of time snuggling him, talking with him, and working on several different therapies with him. It is awesome to see him happier and more awake but at the same time it makes it harder to leave him everyday. The dressings from his surgery were just recently removed and we noticed that the skin kind of puffs out near the abdominal incision and when he is upset it looks like a golf ball is trying to pop out. Turns out it is an incisional hernia. The surgeon said it will need to be repaired at some point, but not until he is probably closer to a year and a half or so. It is good to know that there isn't an urgency to repair it.

Caleb is doing wonderful too and seems to be learning 10 new words each day. The poor thing also has about 4 huge new teeth coming in at once. But despite the pain and the drooling he has been his happy and fun self.

Happy thanksgiving everyone!!

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Caleb stayed home with Mom and Basco and watched the dog show

Lalo spent the day with grandpa and dad

Nana and Lalito - check out his new sheets!!

Mom and Lo

Big grin!

Invite

We received our invitation to the ecmo survivors holiday party at Johns Hopkins. From what we have heard, it is a great event and really wonderful to see all of these happy, healthy children running around, when they were once so sick. Despite some of our current complications and frustrations with not being real close to leaving the hospital, it really is a miracle that Lalo is here with us. I'm not sure if we ever really wrote the specifics on here, but we have typically heard of Ecmo survival rates at 50% and this site lists them at closer to 30% for cdh babies.
http://www.cdhrainbows.org/ECMO.html. It will also be a great opportunity to see some of our doctors and respiratory therapists from the picu.

Lalo is doing pretty good. They are continuing to gradually increase his feeds and decrease his narcotics. They have also completely discontinued one of his diuretics. He was also spotted smiling at his Nana today, might have been all the singing and peekaboo. Not to mention the cool new sheets one of his favorite nurses, Lana, bought for him!

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Smile...from dad :)

For Lalo, love Caleb

Removed

Lalo's Central line was successfully removed this morning. They did take him to the OR just to be on the safe side. He went in bright and early at 7:30 and came back out 20 or so minutes later. No issues and they were able to avoid the breathing tube!!

His feeds were stopped at midnight last night and they are about to restart where they left off at 15 cc's. If he does ok with it, they will go up to 16. They are also going to wean back on his deloudid today. It sounds like they want to be a little more aggressive with this wean due to the compatibility and iv access issues. They are also going him down on lasiks, which is one of the diuretics he is on.

In other news, he is apparently a huge flirt with his nurses. Tell me something I don't know! He was smiling at them big time this morning while they were getting him ready for his trip and overnight he suckers everyone over to come talk to him. Sounds about right

Big brother Caleb drew him a picture with Dad's help this morning. I will post a picture soon.

Thanks for the extra prayers - I think they helped get him through all of last wk's excitement.

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Frustration

So they did get a picc line on Friday, but it is not centrally located. That means it is not as close to his heart as they want it. But the latest word from nicu is that they are hoping it will be sufficient to get him through until his feeds are thru his belly. Fantastic!

But the frustrating...his central line which they stopped using Wednesday night is still in!! This is super concerning because it is an unneeded infection risk and because it is sitting closer and closer to the skins surface right where the ecmo cannulas scar is at his neck. This is what happened last time when it broke through his skin right before his hernia repair. Apparently nicu and surgery have been going around in circles about taking it out. Not sure exactly why it became an issue, sounds like surgery schedule has been pretty jam packed. Which leads us to the next bad piece of news, that it has to be done in the OR. We weren't aware that that was the case until this morning. We knew the surgery team had to remove it but we thought it was simple enough that it could be done with a sterile field, bedside. Unfortunately, this most likely means he will be reintubated for the procedure :(. As of right now the plan is it will be done at 7:30 tomorrow morning. We are praying that nothing happens to bump us because we want it out now!

Other than that, they have been alternating days of weaning his deloudid and going up on his feeds. With all of the picc line attempts Lo received several extra doses of his narcotics to help keep him comfortable. So the last few days he has been pretty knocked out, which meant less opportunities to lose his lunch. I'll leave it at that - we don't want to jinx ourselves...

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No picc line

After 3 attempts they were unable to get a picc line in. They will reevaluate tomorrow in rounds and make a decision. Bummer!! He was given some extra sedatives tonight to deal with the agitation and is now comfortably sleeping. I'm sure he spoke his mind to the picc nurse. Unfortunately, we are thinking this means a new central line.

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IVs

Sorry for not getting another update out quicker. We didn't get anymore real info until I got here this morning and I can't use my phone to update when I'm with him. Surgery was not able to come last night so the started two peripheral ivs - one in his hand and one in his scalp :(. They need 2 because a lot of things are not compatible with the deloudid. Surgery came this morning and said the line must be removed. I believe this is a sterile surgical procedure that can be done at bedside. They are going to attempt to place a picc line tonight, which is not quite as serious a line as the last one. We are hopeful this will work. I know they tried several times when he was first born and weren't able to, but hopefully he is bigger now and they will be able to. Our other option if that doesn't work is another mega central line, which I don't think anyone wants.

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Ugh

We call Lalo's nurse every night around 9 to see how his evening is going. You start to panic when they transfer you to his doctor instead of the nurse. He started leaking from surrounding his central iv line in his chest. It appears to be the lipids (part of his iv nutrition) leaking back out. They are doing an xray and surgery should be down shortly to consult. In the meantime, they had to stop all drips including his deloudid, which I'd imagine is not the preferred scenario in terms of withdrawal. We are praying that they don't need to replace the line, but we are thinking that is a likely scenario. This is why the slow progress on the feeds is so stressful. Until all of his nutrition can go into his tummy we are dependent on a big iv line. Waiting for a call back from the pediatrician or surgeon to see what the plan is...

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2 months old

Lalo is celebrating his 2 month birthday today. For his present, his drs and nurses decided he didn't need the nasal cannulas anymore. So since around 9 this morning he has been breathing on his own without any extra oxygen support and he has been doing great without it. I'm sure he enjoys not have those in his nose and may explain why he has been sleeping like a rock this morning.

The upper GI from last week didn't give us much info. One good thing is that it did not show reflux which is typically an issue with cdh babies. It showed poor motility - how quickly food moves through him, which is probably mostly caused by his anatomy and the surgery, but also enhanced because of the narcotics he is on. The opening from his stomach is also on the bigger end of normal, but they're aren't sure that that is a contributing factor. Right now he is on 11 cc's an hour with plans to go up to 12 tonight, so he still has a way to go with this.

We had a meeting with the doctors on Friday, mostly for the purpose of discussing his MRI and his neuro-development. I wont go into much detail right now, but it was pretty overwhelming to think of how many hurdles Lalo will have in his life after all that he has already been through. However, we also know how strong he is based on all that he has already overcome. We did discuss our path out of here. To get out of Hopkins he will need to get up to full feeds. Then they will be able to transfer him to a less intensive rehab hospital (hopefully a little closer to home). To get out of that hospital he will need to be entirely weaned off narcotics. At the rehab hospital we will be able to work on doing a feeding schedule (not just continuous) and hopefully work on oral feeds in hopes of getting rid of the feeding tube.

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Dad explaining football

Enjoying the game together

Look! No cannulas and a smile!!