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!!

Slide

Swinging

Park

Tired from the workout with dad

More tests

Lalo is still experiencing issues with throwing up.  The docs are going to preform an upper GI study today to see if there is some type of blockage.  The nurses don't think this is the issue because he doesn't have green or brown spit-up.  But at least they will be able to rule it out. 

The pain management department was consulted regarding the issues with weaning him from narcotics.  They felt it was being done too fast and made some suggestions on how to proceed that are more tailored to how Lalo has been handling the weans.  But they did not feel strongly that it was contributing to the spitting up.

They were also able to come down on Lalo's oxygen needs.  The nasal cannulas he was on before were heated, which caused condensation to build up in the tubing and every once in a while would shoot some water up his nose.  That I'm sure only added to the gagging and throwing up issue.  So the other day they made the switch from heated to regular and also came down from 2 liters to 1.  Another bonus is that the tubing is smaller so it seems more comfortable and easier to keep in the right spot.

We did get a bit of good news yesterday.  They did a repeat echo of Lalo's heart since it had been several weeks.  The last had shown his pulmonary hypertension had improved, but this one showed it is gone!  The hypertension is the common issue associated with cdh and is what made him sick enough to need to go on ecmo. Here's a good link that discusses pulmonary hypertension and cdh http://www.chw.org/display/PPF/DocID/34373/Nav/1/router.asp

Despite the issues Lalo looks good and has voiced his his concerns about coming home in time for turkey.  He said he is ready for gravy and the popes nose.

Lalo

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Lalo showing mom who's boss

Mom trying to force the paci habit

Dad and little Lalo refusing to smile for pictures

Daddy's little man

Lalo is still making slow progress. His throwing up continues to be a big issue. At least once over the weekend feeds were stopped for a short time and we are only currently up to 9 cc's. We know that feeding issues are extremely common in cdh babies, but I was secretly hoping Lalo had faced more than his fair share of struggles and that we could skip this one.

He is very close to being completely weaned from his dilaudid drip, hopefully just another day or two. It will be great to take a medication off of his list. Then we can start on some of the others...

Lalo sr. spent all day Saturday with little Lo and had a great time. It was my first day without seeing him, which off course stunk. But I can't complain because Lalo has to go most of the week while he is working. It was wonderful that they got a good chunk of time together. And I got a few things done and had some quality time with Caleb.

Hard to believe how quickly the days and weeks are passing by. Many people have been asking us how much longer Lalo will be in the hospital and we really have no idea. Whenever we push the question, we get lots of "he is in charge", "each baby is different" kind of answers. I would imagine the minimum would be several weeks or a month, but who knows how realistic that is. I'm pretty sure his eating is our ticket out of here, so keep your fingers crossed that this week will bring good things for his tummy!

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Happy birthday Daddy!

Chubbs

Lalo is still progressing on his feedings. We are up to 7 cc's an hour and if things are steady with that, they were going to increase to 9 cc's tonight. We'll have to see how that goes - the poor guy is still getting sick frequently. He has a super sensitive gag reflex due to being intubated for so long, having cannulas in his neck, and all of the other things he's been through.

We had out first meeting with occupational therapy today. They will be working with him several times a week (as will physical therapy) to help him developmentally to overcome his lengthy stay in the nicu. One focus will be the gag reflex as babies with similar issues often develop issues with eating because they only have negative associations from the breathing tube, feeding tube and vomiting. It will also be great to have these various departments working with him one on one since he is 7 weeks old today and he needs more stimulation.

Also, mr chubbs latest weigh-in was 10 lbs 10 oz. Pretty good for someone who's never even had a full belly before!

Thank you all for your continued prayers.

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