Look Who's Reading

We were cleaning today and Ethan and I lost track of Jayden for a minute. We found him IN his basket of books reading. Of course he turned and smiled when he saw us. I'm so glad my kids like to read as much as I do!

Jayden's Next Hospitalization

Jayden's next hospitalization is scheduled for next week. He has a pre-op appointment on Tuesday, a milk scan on Wednesday and then will be put under for the CT scan, endoscopy and lung biopsy on Thursday.

Hopefully it will all go smoothly and we may be out by next weekend. If not, we may have a bit longer stay, but he's a trooper and we hope these tests may give the doctors some more insight.

We'll keep you all updated on here:)

A Peak Inside Our Christmas

We had a fabulous and blessed Christmas. Here are a few pictures from last night and today...

More Good News

Jayden has nearly put on a pound in two weeks - which is half of the amount he gained in nearly 7 months. Seems the formula is working well! He is even getting a little bit of baby rolls on his legs. It's funny because neither he nor Ethan have ever had any.

The boys are really excited for Christmas. Ethan keeps standing at the window saying, "Santa, oh Santa where are you?" and making little comments during the day about Santa coming when he is sleeping.

Everytime he sees a Christmas tree he says, "Happy dirday Jesus!" and he is so excited to celebrate Jesus' "Happy dirday."

We've been busy making empanadas, Christmas cookies and praying as we await Christmas. (Ethan and Jayden both LOVE the advent candles and Ethan reminds me if I don't light them for a meal).

Merry Christmas to everyone! May 2009 bring many blessings to you all:).

Santa

Ethan loved Santa - Jayden was freaked out, but we had a good time. The store near our house has a free Santa away from the crowds (and people with germs:). When we went, we were the only family there except for our friends who also came to see him. Bonus: we got to take our own pictures, so we didn't have to pay the crazy amounts for mall Santa pics.

Ethan and Ella enjoyed Santa's chair after Santa had to hurry back to the workshop to make more toys.

Finally Gaining Weight

We took Jayden in for his weekly appointment with the ped. and he finally gained weight - 6 ounces! That is 2x more than he gained in all previous five weeks combined. He is going to continue on the formula and we are working on increasing his nightly feeds. We are so relieved we finally have something that seems to be helping.

A Little Progress?

We had a GI appointment yesterday and the doctors switched Jayden's formula from the Pediasure to Peptamen, which is an already digested formula, since he has gained no weight in the past three weeks on the tube. It pretty much takes any work (and hopefully eliminates) any potential digestion problems.

He had it all night and woke up and wanted to eat! We were so happy he ate normally throughout the day so we may be on to something. Guess we'll see at his next weight check on Tuesday. We'll have to see.

They are working on scheduling his four procedures together just after the new year so we will let you know when they are set.

He is cruising all around and crawling like crazy so physically, he's doing well.

That's enough fun for Friday night:)

A Little Fun

The boys enjoyed hanging out with us and each other today and Ethan was thrilled with the tiny amount of snow we got last night and begged Jim to help him build a snowman. Jim said it was the tiniest one he has ever built:).

Update On Jayden 12-07

I'm sorry I can't be more creative with the titles, but whatever:).

So Jayden finally turned the corner with what he had been battling the last 4 weeks or so. It took a new dose of a new antibiotic, but it seems to be doing the trick and he is now almost back to where he was at the beginning of November before he started getting this (at least breathing wise).

We were at the doctors every day last week, but on Friday we had to take him in to the pulmonologist. His pulmonologist, Dr. K, told us he is getting more concerned because despite our tube feeding, Jayden has not gained anything. He actually lost a tiny bit of weight (he was 7.93 kg a few weeks back and is now 7.86 kg). He said that despite this, he is glad we added the tube because at this point he could very easily be losing weight if he wasn't getting this added to his diet.

It may not be very apparent right away the issues his breathing has on his weight, but one concern is the more he has to work to breathe, the more calories he has to burn to breathe and the less is being packed into his body. So theoretically, if we can help his breathing and keep him relatively stable, we can more easily help him gain weight.

The good news is that his test show he is absorbing the fat and nutrients in his diet, so it is likely not a malabsorption issue.

We will see a GI specialist this week and after that it looks like we will have him admitted into the hospital for another round of procedures, but if all goes well, it will only be an overnight stay.

They want to do the chest CT scan, a milk scan, a lung biopsy and an endoscopy (assuming GI wants one, which Dr. K thinks they probably will). All of these except maybe the milk scan require anesthesia for him, so we are hoping to line it all up together and only put him under once instead of multiple times. There are always risks, and especially the lung biopsy carries a bit of a greater one, but they really need to get to the bottom of what is going on to really help him.

Dr. K said we are really getting into the realm of very unusual things (which we kind of figured at this point;) and they are trying to explore the more likely and less invasive possibilities first.

Jayden is still as happy as ever as long as we aren't doing medicines and sticking tubes down his nose:). Somebody forgot to tell him he's sick because he sure doesn't act like a sick baby most of the time. The docs and nurses always look over his chart before meeting him and expect him to look much sicker than he appears, which we take is a good sign.

We have such a wonderful, caring community and although this is so overwhelming at times, it is also our normal and we get adjusted each time things change. God always blesses us with what we need as we need it and we are so grateful for that.

We are praying now God will lead the doctors down the path they need to explore to find something to work for Jayden. In the meantime, we pray Jayden does not contract the flu or anything else and we can keep him healthy enough to do these procedures.

They want this all done by Christmas, but we will have to see how it works out. Likely it will all take place quite soon so we'll keep you posted.

Videos

I just added two videos - one of Ethan and his "mamacules" and one of Jayden playing peek-a-boo. You can see them here.

A Little Update

So we got some of the tests back and we are more confident now that he doesn't have cystic fibrosis or Shwachman Diamond Syndrome based on the levels of pancreatic functions they could measure, but the doctors will still not totally rule them out. He did another sweat test and his results were even better than the first time, which is good.

We are still awaiting many tests results and if he can get over whatever he has had for the past several weeks, he will be rescheduled for his CT scan of his chest at least. We are going to try to hold off on the one of his abdomen because they said that one is like getting 40 xrays worth of radiation and so unless we think it will give us some answers, we will not do it right now.

He is tolerating his night feeds a bit better, but we had to cut back to half because the full amount was just messing with his system too much.

He had actually lost some weight when we went to his doc for the post-hospital checkup, but he has weekly checks in the office coming up so we are hopeful he will show some improvements soon.

Jayden is still bordering on going back in the hospital right now though. His breathing is labored and we can only kick up his medicines so many times in a row before it becomes ineffective. Please continue to pray he can regain some steady health at least.

Ethan has been such a good big brother. He loves singing songs to Jayden when Jayden is upset about his treatments and kept rubbing his head to make him feel better. Ethan is getting quite excited about Christmas too.

Hope you all had a great Thanksgiving!

We're Home

Well we're set up at home again:). We are really hoping the hospital visits are held to a minimal this year, but grateful they can do so much to help Jayden.

He will be on a feeding tube for at least a few months at night as well as eating normally throughout the day. He will then be evaluated to make sure he is gaining anything. If not, they will have to adjust his feeds and go from there.

He has follow-ups to see all the specialists and will hopefully stay well enough to wait to see them until those visits.

Not many of the tests are back so we'll hear over the next month results and maybe be able to figure out what to do to keep him healthy and help his weight.

We have a home nurse coming today to set up all his machines and meds and give us additional training so we will be pros at home.

Other than that he is a happy baby as usual. We are glad to be home in time for Thanksgiving and thankful for the wonderful support from our friends and family.

NOTE: We will not be coming into town anytime before the end of April at the earliest - at least as a family. It is just too risky to Jayden's health to travel and it's a risk we're not willing to take. We will miss everyone at Christmas and Thanksgiving and pray you all have a very blessed holiday!

Monday

Sorry - no creative ideas for a title:). We just got word we will not be able to go home today because they can't get all the equipment we need to go home with until tomorrow so we are just hanging out.

They just did another sweat test this morning for their records and drew more blood last night.

He did really well with the feeding tube last night and even got up to 40 ml/hr for the last two hours. He was 7.93kg (or 17.483lbs) when we got in last Thursday and is 7.96kg today (or about 17.549lbs) today. The doc said it may take his body some time to adjust to the change in food and to start getting positive gain.

I still have no voice and spent the night in the bathroom with the flu so I am sure that is what made him throw up on Friday, which is a bit of a relief because at least we know it wasn't an allergic reaction.

He did have an eventful morning because he managed to jiggle his side of the crib down after bouncing on it while pretending to nap and fell out onto the floor. I got them to replace his crib because it freaked me out - especially because I always check the sides before leaving him in it and had just before that. He was thoroughly checked and is doing fine - he was just really mad.

No new tests back - just a lot of waiting. Hopefully we will get released tomorrow morning. As much as we love living in CHOP world, it would be great to go back to my own bed and do normal things like think about shopping this weekend for Christmas:).

On The Right Track

Jayden had a great night last night. He did not throw up again and the slowly increased his feeds to 25ml/hour. The goal is 40 ml/hour. If he does well again tonight, they may let us go home tomorrow because they are nearly done collecting the samples (blood urine, stools) they need to collect.

Jim was a rockstar last night and successfully inserted the feeding tube, tested it and got him set up for the night. I reinserted it this morning and will be in charge tonight. Then we will do it at home for awhile while he hopefully gains weight.

They have not weighed him today, but hopefully his gain will be positive.

His lungs are improving as well - just an added bonus. It has been a bit of a break for Jim and I to not have to administer every breathing treatment and med as well.

Many of the test results will trickle in over the next several weeks and we'll see how it goes. There's no point in us staying here after we get set up as long as he is doing well, so that's great for us.

Not much else fun. The weekends are quiet as many of the labs are done only throughout the week and the docs tend to just check in and keep the status quo more or less.

Besides the tests, he has been as happy as usual and he and Ethan were having fun playing with the trucks child life brought into us.

Saturday Update

Sorry for the delay but it has been quite busy and I got sick so by the time I got home last night and got Ethan settled down, I crashed. I also lost my voice so thank you for all our friends and family who have called and offered support - it really means a lot to us. Please forgive us if we don't get a chance to call back but at least for today, I'm are not planning on answering many calls or returning calls so I can rest my voice (unless you're our mom or one of the docs:).

Hmm where to start. His first night of tube feeding went smoothly - they started him off slow. His second night wasn't as smooth and he threw up everything - including some undigested food about 1:30 am. Consequently he also lost weight, although just a bit. He still had undigested lunch from eating at 4, which wasn't great, but we're just going to have to keep with it and see if there is a pattern. If the same thing happens tonight, we will have to back off and try to change up the Pediasure and/or change some of his meds.

They also doubled his antibiotics he's been on since Monday because he is still not close to 100 percent. Even though that's not the main reason he's here - he was nearly admitted last Sunday because of his breathing and wheezing so we really need to address it.

They are analyzing a stool sample to see if he is really taking in the nutrients and fat from his food or if it just goes right through him. We really think that will be the key to guiding us where we look next.

Otherwise he is having fun. Ethan has helped him turn this room into a playroom and they are having a blast with watching a ton of movies.

We are putting a hold on the CT scan because of whatever is going on in his lungs right now. If they sedate him for the CT scan and he's having issues with his lungs right now, he could have to be intubated and on oxygen and we would be here at least another week. They think the tests they have in right now may tell them what's going on or at least point them to the right area.

The nurses are extremely skilled and obvious veterans on this floor and the docs we are working with are superb, so we are in a good place. His basic blood work came back relatively normal except for some areas that indicate he is sick right now, but when isn't he:)?

Most of what they are looking at makes him more susceptible to infections and viruses, but we already suspected that. It just makes the washing hands, hand sanitizers, flu shots and immunizations that much more important.

He has ripped his NG tube many times and since he is only doing night feedings, we are waiting to reinsert them until night time so we don't have to worry about it.

Jim and I are going to learn how to insert his NG tube tonight so please pray for us. It's not supposed to be difficult, but neither of us set out to become medical professionals so we are a little apprehensive of doing it. It's also not fun doing stuff to your own kids when they are screaming and pleading for you not to. They are ordering us the equipment we need at home and we are hoping this is just a short-term deal.

We are so grateful to be getting answers, but still it is a bit overwhelming. We definitely have moved to another level of care. The benefit is they all really take your concerns and opinions very seriously as a parent (not always in general peds). The hard thing is being part of the chronically sick kids, but at least we have what we need here.

Not much else happening this weekend. Thanks for continuing to pray. That is what we truly need more than anything and what helps us to walk this journey and have the strength our boys need for us to have.

PS: I am working on adding a subscription link where you can enter your email and get notices each time we update the blog ... just an FYI for those who are interested.

We're Settled In

We're settled into our room and got set in the South tower of CHOP. We got a private room (YEAH!) and have a litany of specialists heading in to evaluate Jayden. Thia is going to be brief because it has been an extremely long day, but Jayden is doing his first feeds. They are doing NG feedings (not through his stomach unless they have to do this more long-term) and they are just doing it at night. Jim and I will learn how to insert the tubes and set up his feedings later, but the nurses just took care of it tonight.

They sent off for a ton of blood work and he has been seen by the geneticist, two pulmonologists, respiratory therapies and GI specialist. He was also taken to get some more xrays completed.

Tomorrow they will be collecting stool samples and he will be sent off for a CT scan. He may also have a lymph node biopsy, but a lot will depend on his blood work ups.

A funny note: one of the pulmonologist came in to see him (the pulmonologist on rounds) and was talking to us about lymphactasia (sp?), another rare condition he thinks is worth looking into. We talked about the day and this new idea and then we talked with him about Shwachman Diamond's Syndrome (SDS).

He said, "Well Dr. K gets a bottle of champagne if it's SDS and I get a bottle of champagne if it's lymphactasia." Jim and I looked at each other and burst out laughing. (Dr. K is normal his pulmonolgist). At least we know we're providing a bit of entertainment here.

Dr. Coren said they do fine with the normal kids here, but what they really love are the puzzles like Jayden, who are a lot more complicated to figure out. Jim said at least we're adding to their knowledge and expertise:).

Ok - good night and more info tomorrow.

On Hold ...

So after spending most of the day on the phone working out arrangements for Jayden and Ethan, we could not get him in this afternoon as they had hoped because we ran out of time. He is set to go in tomorrow morning at 9 am and we should be set up in our room by midday. Thanks for all the prayers - they bring us strength as we continue working on figuring out this challenging problem and helping Jayden grow to be a healthy baby.

We're Heading To CHOP

So we went in for Jayden's 1 year checkup today and things were a bit shaken up for us. He has only gained 2 pounds since his 6-month checkup, even with the extreme addition of fat and calories to his diet so they are admitting him into the hospital for a week or so and putting him on a feeding tube. They will also teach Jim and I how to give him feedings as he will probably be on the feeding tube for a month or two at night while he sleeps.

The biggest underlying concerns with his weight and health is that if he would catch something, it could be a struggle for him to overcome it. They want us to go in tomorrow, but have given us a few days to work out the details.

They (his pediatrician and pulmonologist) are discussing possibilities for what we need to look into and what treatments and specialists are next on the list. While we are there, he will be under the care of pulmonology. He is getting set up to see a nutrionist, GI specialist and the geneticist as well. They are also talking about sending us to John Hopkins in Baltimore to get some testing done that can only be done there currently.

He is being treated as a cystic fibrosis patient right now because although we did a genetic test, they are still not comfortable ruling out cystic fibrosis. The test we did only tests for 70 known mutations and there are more than 1000 known mutations linked to cystic fibrosis. If he does have it and they delay treatments, it could cause permanent damage for him, so they feel they should be more aggresive. We feel we would rather be safe than sorry.

They are looking at us using some more aggresive therapies with Jayden to help break up congestion in his chest and hopefully prevent infections from brewing.

Also as first signs of any cough, he will have to start some aggressive antibiotics to hopefully ward off any long-term infections.

We will also continue to look into Shwachman Diamond's Syndrome.

The good news is he began Synagis today and hopefully that gives him an extra layer of protection as we get deeper into the winter season.

One Year Old Fun

Jayden turned 1 on Saturday and had a birthday party with a few close friends. He LOVED his cake and sucked on it for awhile which was comical. He also had fun playing with Luke and Ella (and all the adults of course:). He and Luke start getting really excited now when they see each other.

Immunologist Update

His antibody levels and bloodwork can back in the normal ranges - yipee! It doesn't give us any answers but we may just have to rule out a millions pieces before truly being able to help him. He goes in for his 1-year appt. next week and will begin the Synagis. Hopefully he's gained a bit of weight. He was 18 pounds the other day with two layers of clothes on and a full diaper, so I'm guessing he at least has hit 17 pounds.

Also if you can continue the prayers. He is getting sick with something and has been sounding worse throughout the past two days. Hopefully we can just continue to fight it at home and the wheezing doesn't get too bad.

Jayden Got Approved

I just got a phone call that Jayden was approved for Synagis this year - praise God! Hopefully that will help him get stronger and help us figure out his complicated immune system.

Now An Update ...

We went to the pulmonologist yesterday and it looks like we are on our way to visit more specialists.

First some really good news: it looks like the insurance company is putting through an approval for Jayden to get the Synagis shots throughout the winter (once a month for 6 months). It's casually referred to as the RSV vaccine and may help keep him healthier. It doesn't mean he can't get RSV, but may be able to build up antibodies ahead of time to help fight it. It is extremely difficult to get approved for and very pricey so the only way we can get it for him is if insurance covers it. The nurse in charge of it has been working on getting him approved for several months now.

The pulmonologist was nice and gave us some interesting insights/opinions. He said he's not convinced he has asthma, but thinks it is a secondary symptom of other issues. I could give you a long explanation of all we talked about, but I'm just going to sum it up here, so if you want it call or email me. We will be going to see a pediatric GI and the geneticist.

We are also looking into a genetic disorder that while rare, actually encompasses all of his problems. It presents itself similar to cystic fibrosis, but doesn't affect the lungs in the same way and the kids test negative on the sweat test. The name is Shwachman-Diamond Syndrome.

We don't want him to have any issues, but he does and right now we are just spending a lot of time treating what seems to be the symptoms, but not getting down to the problems. The long-term effects of some of his medicines can cause problems and we want to help him develop how he is supposed to.

One of the biggest blessings is that we are located so close to CHOP and they see a lot of kids with this and similar problems on a regular basis so they are very equipped to handle it. Hopefully somewhere along the line we can come to a conclusion and not keep adding specialists:).

As always, continued prayers are appreciated, especially that we can help him by not sticking him through a million more tests or procedures.

Grandma and Grandpa Neels Visit

The boys had a lot of fun with Grandma and Grandpa Neels and Aunt Lauren and Uncle Paul. We took a quick family photo at a park near our house as it got dark. It actually too dark at the end so whatever:). You work with what you have.

Two New Movies

I put up a new video of Ethan singing songs (including one he made up) and Jayden doing all kinds of stuff. You can see them here. Enjoy!

Immunologist Update

Jayden had an appointment with the immunologist on Monday at CHOP. It was a long day, but may help us pinpoint what has been going on with him. The long and short of what they told us is that they were going to do a whole bunch of in-depth blood work and if the problem is with his immune system, the blood work will be able to identify the big issues and we can go from there. They examined him, but when looking at the immune system you really have to do blood work.

They are focusing on looking at his blood to make sure it is making the right number and the right quality of antibodies. One thing they said is a baby gets antibodies from the placenta before they are born and those last until about 4-6 months. At that time, the baby's own antibodies should kick in and if they don't they may have a lot of problems like not gaining adequate weight and have developmental issues as well as being sick.

Anyway, we just have to wait and see if his blood work comes back normal and we'll go from there. If it does, we will continue with the new pulmonologist and likely the geneticist but we won't likely have to keep the immunologist on our list of regular doctors.

Sleeping Boys

I love sleeping baby pictures! Ethan's cracks us up because he was sleeping with his sunglasses on upside down, his choo-choo blanket and the multi-colored blanket mom made him and it was 78 degrees outside. There's also a cute one with Jim and Jayden.

Quick Update - Good News

So we got some pieces of good news about Jayden today - his WBC rose up to 1800. That means he although he is still low, he is nowhere where he was before and a lot further away from that critical level. So we still have to figure out why he is off, but hopefully we can do that in a few visits.

It looks like when he gets sick, when his WBC should get higher, instead it goes very low and when he is ok, it is still low, which makes sense that while he catches nearly everything like most little babies, he can't fight it off on his own. Now we need to try to figure out why.

His genetic testing for CF came back negative! We are so happy about this. They tested for the 70 most common mutations associated with CF and they were all negative which is fabulous news.

Anyway - some great news for my birthday:)

Just Hanging Around

You gotta love that smile:). I just had to post this picture!


And here is Ethan becoming as smart as his daddy reading Chemical and Engineering News - he refers to molecules as "mamacues."

Some Good News

Jayden tested negative (YEAH:) for the wheat allergy and the rest of his panels, beside the cystic fibrosis came back fine (we still have to wait a bit for the cystic fibrosis results ... We'll take all the good news we can get.) We are repeating his white blood count next week and until then we are just chillin at home. His doc said regardless of the steroids he is on, his white blood count shouldn't be anywhere near the level it is at, especially at the low doses he is at. Thank you for your continued prayers. We all appreciate it and feel the effects of them daily.

Jayden's WBC

So Jayden was finally well enough to get his blood taken to test for all the things they are testing him for. He actually has an ear infection, but that's all right now. There were three batches of blood, one set of standard tests and two of other. The first came back today and his white blood count (actually his Absolute Neutrophil Count) is pretty low. The white blood cells are what help your body fight off viruses and infections and his doctor said they would be pretty concerned if he had a 2000. His count is 700.

That makes him a lot more susceptible to any infection or virus he comes in contact with. It may be that he has some viral suppression and that it is a temporary thing, but they are going to retest him in two weeks to see if it changes for the better. Just wanted to give you updates on what is happening. Please keep him in your prayers that he can be strong enough to continue to fight anything he comes in contact with. Looks like our seclusion inside (at least for the time being) is beginning a bit earlier than we planned:).

Another Doc, More News

We went to the doctor for Jayden's 9-month check-up and they are still quite worried about his weight gain. He is less than 16 pounds and gained less than a pound in the last three months.

Hopefully he is not allergic to dairy, because we are adding cream to everything for him to pack on calories and hope he gains some weight with that. Guess we'll see. The thing they are most worried about is if he doesn't gain enough weight and gets sick this winter and loses a pound or two, he could be in very serious condition.

I did look up how much I weighed at his age and was a pound less than him, which reassured our doctor a bit when I spoke with her again this evening. We are running a whole bunch of tests to make sure we aren't missing something and hopefully we won't find anything abnormal. They are running some additional cystic fibrosis tests because not all cases of cystic fibrosis are apparently picked up by the sweat test, but it is unlikely he has that.

He also has to see a kid eye doctor because one of his pupils doesn't retract in bright light like it is supposed to, which may be a side effect of the medicines. If it is though, I want to make sure and try to switch him on something else to try to prevent more damage to his eye.

As always, continued prayers are appreciated.

My Boys

Manhattan With The Two And Under Crowd

We had a blast visiting Jim's cousin Chris who lives in lower Manhattan. We found some city playgrounds, walked around the neighborhood, visited Central Park after church and went to The Museum of Natural History (Ethan loved the dinosaurs).

We had a really rough start though because the "B" - Ethan's Bear - managed to get lost somewhere on the platform at Princeton Junction. We of course didn't know this until already heading to NYC, so we had to find a last-minute replacement. Friday night was rough, Saturday was a bit better, but he was relived when we got home to find his "B" (Thank God we have a replacement).

We named his bear we bought in NYC "Bob the B" and although he was liking Bob the B, he was very happy to find his bear when we got home. We had to file a report with the New Jersey Transit lost and found, but they couldn't find it. We told Ethan the B went bye-bye in the train. He kept waking up Friday night and moaning, "Oh no! The B!" He was also confused what was happening to his eyes and his nose (he was crying). It was sad, but very cute too.

Here are a few pics:

Down The Shore

So since we are Pennsylvanians now, we have to speak like Pennsylvanians. We didn't go to the beach for the past few days, we headed down the shore. Whatever we did, it was fun. We went to Ocean City, NJ - a great beach town with a fun boardwalk and lots to do.

Jayden enjoyed his first time playing in the sand and the water. Ethan and Ella had a blast and Luke was all over the place so we couldn't actually get him in any of the pictures.

Bath Time Together

Ethan and Jayden are loving doing new things together. One of the newest is bath time. They spend most of the time splashing and giggling (although Ethan looks confused in this picture).

Fun In St. Louis

We all had a blast going to Uncle Gabe and Aunt Rachel's wedding and hanging out with Hannah, Grandma and Grandpa Lozano and all the aunts, uncles, family and friends. Here are a few of our favorite pictures. My personal favorite is Gabe and Rachel with Gabe's L12 at the reception. Leave it to Gabe to have Wok Express for his wedding dinner:).

Summer Fun

We had a blast doing photos yesterday morning. I am working on building up my portraits in my portfolio so I can start doing more of that type of work.

Playing With Friends

Ethan and his best buddy Ella along with Jayden and Luke. Jayden and Luke were very mad at the time I took this because they both wanted lunch. The kids have been enjoying exploring the pools and rides Sesame Place. We are determined to get the most out of our summer passes.

Ice Cream

Jayden tried his first ice cream and Ethan enjoyed his bowl of cookies 'n cream when Friendly's gave away free ice cream last Saturday. Nothing like enjoying a cone right before dinner. I felt like when mom was away for a weekend and dad would let us choose "dinner.":)

On The Right Track

So we went for Jayden's weight check yesterday and he gained 12 ounces - definitely close enough for a kid his age. The doctor was pleased and said as long as we can keep getting him to gain weight and keeping him on his medicines, he should be just fine. It's great to see him get little baby rolls on his legs:).

Both of his doctors have also shared with me how concerned they were that he had cystic fibrosis. You could tell as they would treat him, but sometimes it is better not to know their level of concern until later, when things calm down a bit. Praise God again that he just has to deal with the asthma and other small things. Hopefully this summer will make him so much stronger for next winter.

Great News

We got the test results back for Jayden and he does not have cystic fibrosis. That means that although he has lots of other breathing problems, the worst has been eliminated. Some of the other problems he may grow out of as he gets older and the asthma may even get to be less of a problem as well. Thank you all for all your prayers and support over the last 5 months - we wouldn't have been able to do it without those. And praise God he is negative. You don't realize how much we take good health for granted until it you or someone you love's health is threatened.

Testing Complete

So I took Jayden for his appointment and sweat test today. He gained a pound in a month, which is right on track and we were able to get enough sweat to test him. We should know the results by tomorrow so we'll keep you posted. Thanks for the prayers!

Love,
ria

Six Months Old

It seems like a very long road, but Jayden just turned 6 months old and we celebrated with little cookies (even though he couldn't eat them. Big brother Ethan sure enjoyed them). Jayden did taste the frosting and liked it.

Packing On The Pounds

So we took Jayden to the doctor's on Tuesday and they're concerned about his weight gain - or lack thereof. We were sent home with instructions to "fatten him up." We actually had to buy the high calorie formula and start adding pure butter or oil to his baby food. (It was very weird talking with a doctor about adding as much fat and calories as you can to someone's diet). He's loving it because he gets to eat whenever he wants.

We're scheduled to go back for a weight check at the beginning of next month. He is also scheduled for his cystic fibrosis testing at the end of this month. Keep those prayers coming:).

Too Tired To Play

Jim was with the boys last night when Jayden fell asleep in his exersaucer. Jim had fun with the camera.

At The Zoo

So, we realized how spoiled we were with the St. Louis Zoo growing up - both how big and diverse and good it is as well as how FREE it is:). In the last few states we lived, we have visited multiple zoos only to be disappointed. They were nice but generally expensive and generally offered less than what St. Louis offers.

We hit the Philadelphia Zoo last Friday, a bit skeptical, but pleasantly surprised. We only made it through about 1/3 of the zoo, mostly because five moms had eight kids, but we enjoyed what we saw.

It is expensive - nearly $20 a ticket - but apparently it was the first zoo in the United States. They have a wide variety of each animal and lots of room for most of them to move as well.

Here are some pictures of my cutie boys in the stroller. Ethan loves his cheesy grin now and rarely gives me a normal smile, but it's still cute:).

Update On Jayden

We are so happy to report Jayden is doing very well and breathing easily - the first time since January. It looks like the combination of meds they have him on are doing their jobs.

He still has to get tested for CF, but all the doctors were very pleasantly surprised with his progress. He is now getting to do some "normal" baby things like practice rolling over and trying some baby foods.

Fun Picture

Ethan is so excited to have Jayden home he keeps trying to pick him up to sit with him. The funny thing is, Ethan only weighs 25 pounds and Jayden is more than 14, so he can't really pick him up.

Some Good News

I just spoke with the doctor and the lab found two bacteria in Jayden's lungs is two of the most common bacteria around. That is great news because if they found weird ones, we would be very worried. They are going to start him on a course of antibiotics along with his 5 other medicines and hopefully the combination will clear up his infections and keep him healthy.

We will repeat the sweat test in a month or so, but hopefully he's on the side of kids who just have really bad asthma and acid reflux and just was having trouble fighting off everything at once.

Thanks again for your prayers. Please keep praying we can make it safely to summer.

We're Back Home

We've made it back home on our 6th day back in the hospital. We think we're getting more answers now, which is helpful. They did find increased white blood cells in his lungs, which signal an infection. Now we have to figure out what caused it and how we can treat it. We are still awaiting the full pathology report.

Here is a cute picture of him in the hospital. He spends a lot of time flirting with the nurses, but is sure happy to be home. Now we are hoping to get a bit of rest and spring cleaning in.

Plan Of Action

So I spoke with his pulmonologist this afternoon. She said a lot of the irritation may be aggravated by the acid reflux, so we are getting a new acid reflux medicine. They are attempting to grow cultures in the lab to figure out what was in his lungs and we should know that by Friday or Monday. If that shows bacteria, they will give him the appropriate antibiotic.

They are going to wait a few weeks for another sweat test in hopes he gets bigger and healthier.

Finally, if he has a good night, we can go home tomorrow! Yeah:). Hopefully we can keep him out of the hospital for awhile:).

Done With The OR

Jayden had his bronchoscopy and the flexible tube down his nose. They decided not to do the larynxoscopy because his larynx looked normal and he had a lot of inflammation they want to minimize causing extra inflammation.

He does have some trancheomalacia and a lot of bronchialmalacia, which pretty much means the cartilage in his trachea and bronchial tubes is very soft and floppy and collapses easily with inflammation.

His left lung had some thick mucus and was inflamed, but is right lung had a lot of mucus and was very inflamed. She tried to suction some of it out, but his right lung kept collapsing in on it. They sent samples to the lab to be tested, which may or may not tell us much.

I asked her about the cystic fibrosis and she just said we'll wait to see what the pathology reports say. They may tell us something or may not, they are not all conclusive. He will still do the sweat test when we can.

For now he is sleeping off the anesthesia and they are going to continue giving him steroids to help reduce the inflammation.

He is also going to do a course of antibiotics in case there is bacteria growing in his lungs.

We'll update everyone when we know more.

Halfway Through

Jayden's Upper Gi came back completely normal today, which is fabulous. It means he does not have anything from the outside pushing on his airways (any growths or tumors). We tried to do the sweat test, but the think he was too dehydrated from not eating before the upper GI because he didn't have enough sweat to test. The doctors are thinking more and more that cystic fibrosis is not the cause of his medical issues, but still want him tested.

We just entered the period of his no eating for the procedures later today. He is on his IV fluids, but it's difficult for babies to understand why they can't eat when they are hungry. He will not be a happy baby come morning, but pray they can get him in the OR early. Also pray for the anesthesiologist and all the doctors who will be looking at his airways. He will have three procedures done and then they may take some biopsies as well to test, especially if they see any abnormalities.

I will update more as more test results come in.

Preparing For Testing

Not much to report. We are just waiting for all the testing to begin. Jayden is doing well and his oxygen levels are doing well.

Hopefully we will start to get some answers soon. We will be in until at least Tuesday evening or Wednesday morning and if they find some serious stuff, it could be longer, but we will just see. His CT scan is also scheduled for Tuesday. Not too shabby, we could get them all done in one shot:).

Love,
ria

Saturday Fun

Jayden is doing ok. He had a better night and is getting to eat again. He will be here until at least mid day Tuesday because they have him scheduled in the OR for a bronchoscopy with the ENT, whom he saw last night, and the pulminologist on Tuesday for a bit. He still has an upper GI on Monday, but now as an inpatient and he's doing the sweat test here as well.

Nothing else fun. He's just recovering from whatever he got this time and we're setting up shop here.

Bonus: This hospital offers free meals for nursing moms. I guess they figure if they aren't feeding the patient, might as well feed the one who is feeding the patient:).

We're Back ... In The Hospital

So Jayden got admitted into St. Christopher's this morning. He was having trouble breathing, not getting mucus up, an increased heart rate and respiratory rate, etc. etc.

He is going to be here until at least Tuesday morning so they can stabilize him and then run the tests they need to run. He was temporarily taken off feedings, but one of the medicines they gave him here is helping a lot, so he got to start nursing again this afternoon.

At least we can get all these "appointments" out of here quickly:). Hopefully this will be the last time for a long time.

As always, prayers are appreciated.

We're at a new hospital and Internet access is limited so cell is better to reach me on.

Love,
ria

Happy Easter!

We were so glad to have Jayden home from the hospital and breathing alright again. Later in the day, Jayden and I took off for our trip back to the Lou. Jim and Ethan will join us later this week.

Yeah - A Trip

So Jayden has been cleared to head to St. Louis as long as his condition is the same as it is now or better, so it looks like we'll be able to come. We'll just have to be extra careful so he doesn't contract anything else.

Jayden's Heading Home

The doctors just cleared Jayden for going home from the hospital. We still don't know about our trip, but at least he is going home for Easter:). Thanks for all the prayers and love. We will keep everyone updated.

Another Night....

Well, he had to go back on oxygen for awhile and so we're staying the night. He's back off it again, so hopefully he has a good night and we can head home tomorrow. Only time will tell. Not much else news. His CF test is scheduled for a couple weeks from now, but they will have the results 24 hours after it is performed, which is good. Until then, we hope to get a bit more rest.

No More Oxygen!

So Jayden decided he didn't want his oxygen anymore and took it out early this morning. The nurses laughed and let him go, and this time his oxygen levels didn't go down too much, which is a great sign. The doctor said if he can keep this up throughout the day, we may get to go home.

His doctor said he definitely is asthmatic (really, you think;)?? They are trying to get him in for the sweat test this morning to test for cystic fibrosis, but if he can't get in this morning and he gets released, we will come back for that as an outpatient.

The prayers are great and he has been getting a lot of rest, especially since Ethan can't climb into his crib or poke him every minute of the day.

Some News

So we have some good"ish" news. Jayden did test positive for a virus and hopefully that explains everything. We are hoping that means he's just been a somewhat unlucky little boy who hasn't had enough time to really build up his immune system and not signaling some more serious possibilites.

They are still looking at a few other things and haven't tested him for cystic fibrosis yet, which they will be doing in the next day or so. We are praying that comes back negative, but it is a possibility and we need to check into it. So at least we will know after he is tested.

Keep the prayers coming. They said if they can get him off of oxygen, he may be able to leave tomorrow, so we'll see.

Update on Jayden

Well, he's doing ok, but they had to put him on oxygen overnight to stabilize him more. His oxygen levels were getting too low as he slept. We'll see how he does with/without it today. Today they are looking at many underlying causes for his never-ending breathing issues and we'll see what all the "experts" can come up with. In the meantime, it's just a lot fo waiting. Thanks for the prayers and keep them coming.

Back For Another Round

I will update the blog when we get info.... As always, prayers are greatly appreciated.

Jayden is in the hospital again. Pleas say prayers they can help him and get to the bottom of his breathing problems. He is having chest xrays and a lot of PT, deep suctioning, etc. and will be staying for at least tonight. In his current state, he is not able to fly and will not be able to travel. They said they think with some effective treatments, that should change, but we just have to see.

We will have more updates later...hopefully this is a short stay:)

Love,
ria

Trouble Times Two

Jim's aunt gave the boys these matching outfits and so we decided we need some cute pictures with them.

That smile looks like Ethan's up to something....



Sometimes Ethan tackles Jayden and you can tell Jayden's just in for the ride and not sure what to do.

Jayden's Big Smile

So cute....right after a bath.



Trying out the high chair. He's not old enough to eat real food yet, but he wants to be at the table during dinner and gets upset when he can't be.



Dancing around in the bath tub!

Ethan and Jayden on the Go

Jayden's still a little small for the Exersaucer, but Ethan loves it when he spends some time in there and is eager to share his toys.



Jayden is getting ready to take off....



Ethan and Jayden on our couch ....



High tech Ethan ...



So this is our last post of the day... we're catching up from the last few weeks.

Jayden's New Friend

Jayden has been sucking his thumb and loves his doggie blanket Aunt Jen and Uncle Tony gave him.

Two Of A Kind

I just have been enjoying watching the boys begin to interact with each other as brothers. Jayden lights up each time Ethan runs over to talk to him and Jayden tries to talk back. Ethan wants to hold him on a regular basis.

Up To No Good?

Ethan decked out as a shoeless fireman. He looks like he's getting ready to do something he shouldn't:). You can also see more videos I added last night and over the last few days of both boys at on our site.

Jayden Smiling

He's feeling a lot better and is showing off his new found smile:).

Home Again

So Jayden came home tonight. He had an unidentified virus that caused the respiratory issues and a weird rash, but is doing a lot better. They weren't sure we'd go home today, but luckily they decided at 8 pm we didn't have to spend the night because he did pretty good and was finally eating enough (with a little prodding from mom:). Thanks again for all the prayers and please pray the rest of winter is uneventful for him and he is able to just be a healthy baby.

Update On Jayden

Great news - he tested negative for RSV this time so he may just have bronchiolitis caused by another virus. We are in a regular room and if he does ok with his breathing, we may be allowed to go home as early as tomorrow. They said he may have hit the worst of this one this morning. A quick stay isn't so bad, but please keep up the prayers because we will need them to make it through the rest of winter:).

Back At CHOP

Jayden is getting readmitted into CHOP. He is not going to be in the NICU this time (hopefully at all) but they think he has bronchiolitis again from another strain of RSV. We will let you know when we get chest xrays and the mucus tests back.

Fun Tidbits - Ethan and Jayden

I am enjoying our time at home now that Jayden is home. Jayden is still sick and will likely be for another week or two, but is also improving, which is great.

The doctor said when he was admitted to the NICU his lungs were holding the most fluid they could hold without shutting down, which is why he was admitted into the NICU and not just the hospital. She said he was one of their most severe RSV cases they've had this year. Praise God for all the prayers and that he is recovering so well!

Now we just have to get through the rest of the cold/flu season without him catching something else. The doctor said that is the biggest threat to him and could be very harmful if he caught something. When it's put that way, it's not too difficult to become a shut-in for awhile.

Onto something not health related(it is so nice to be able to do that).

Many people have asked us about why we picked the name Ethan and even more about why we picked Jayden.
The biggest reasons were

• because we liked them


• we loved the meanings


• they were not too common, but still known (at least when we picked them)

Ethan means firm, enduring, strong. The origin is Hebrew.
Ethan was a man distinguished for his wisdom in the Old Testament. He lived during the time of Solomon. He authored the 89th psalm.

Jayden was derived from Jadon. It means thankful or God has heard. The origin is also Hebrew.
Jadon assisted Nehemiah in rebuilding the walls of Jerusalem (Neh 3:7).

Getting Back To Normal

So we are starting to get back to normal, although Jayden may still be sick for a few weeks. We were very blessed this week to have both of our moms come up at different times to help with Ethan while Jayden was in the hospital. We would've liked it to be under different circumstances, but we were glad they were up here nonetheless.

Because of when Jim's mom came, we didn't get any photos since Jayden was much sicker when she was here. By the time my mom left, he was so much better and so we have a few photos to share.

Homeward Bound

The doctors came in and said Jayden has made such good progress we can be released TODAY:). They said he isn't 100% and won't be for awhile, but because he is doing ok off the oxygen and other help he needed until yesterday evening, and because he is eating well we can bring him home.

Thanks to everyone who has offered prayers for him. This virus is very scary and does kill some babies every year. While we knew that, we were praying he was strong enough to fight it off. We will have to be extra careful with him in the next year, but he should make a full recovery.

Thank God our little one is on his way back. He even was playing and awake a bit this morning before wearing himself out eating - he is a true Lozano / Neels .

Doing Well

Jayden is doing well and the doctor said the could move him out of the NICU today but no beds were available. If he continues to do well throughout the night we may be able to go home! We are praying he will let us know if he is ready, and if he is we are looking forward to the possibility. He still has a terrible cough, but the biggest key is keeping him off of the oxygen and whatever we can't already do from home.

More Progress

Jayden made some good progress today. He was finally able to nurse again and I don't think I've ever seen him so happy or content. They warned me he may have a lot of problems and may not take to it right away again, but they were wrong.

He was very happy to be nursing again and so far has not had much respiratory distress while nursing, which means he can keep doing it. His oxygen levels have been reduced again and we're getting to even talk about maybe getting released from the NICU. We may be in the regular hospital for a bit, but it all depends on how he is doing with returning to normal.

We were happy to see him finally smile a bit again and start cooing, so he's finally getting back to his old self.

An additional blessing ... he tested negative for whooping cough so although he is still in isolation, no one has to wear masks anymore around him.

Hopefully we will have more good news as the week progresses. Keep the prayers coming:).

Jayden's Baptism

Jayden was baptized today in his cozy room 2026E at the NICU. Mom actually got here right before the baptism and was able to be with us. A sweet nurse took some photos for us as well. We will have a ceremonial christening later, but he won't be rebatized because once you're in, you're in...lol:).

As far as his health, he is still improving and the are optimistic he may be turning the corner. He still is on oxygen and IV fluids, but is taking more milk through his feeding tube and may even get to nurse by tomorrow evening or Tuesday.

Thanks again for all the prayers. We are optimistic we may be able to bring him home later this week.

Some Photos

They are increasing his feedings but haad to increase his oxygen again. Now that I have my cameras up here I am having fun taking photos - every day is a photo op. He is one of the biggest babies in the NICU (as is evidenced by his bed). More tomorrow:)

Saturday Update

Jayden is stable right now and possibly improving a bit. He is still on oxygen, but they are letting him eat a little through a feeding tube today and seeing how he takes to it. He still has a nasty cough and we are not sure the results of the pertussis tests yet, but is actually a bit alert and is not constantly panicking every time he has a coughing attack.

We have amazing doctors and nurses and the support staff has been great too.

You can put in for sleep rooms and I have been blessed to get one every night, which is wonderful because I can stay right down the hall from him, but still get some sleep.

Thanks for all the prayers and keep them coming. We are feeling the effects.

Love,
Ria

PS: Here is some info about RSV on the CDC web site. Jayden has a severe case, but is doing ok:).

Six Weeks Old

Here is Jayden on Christmas morning wrapped in the blanket mom made him.

Little Tough Guy

Enough said...

Santa Here We Come

Our church held a lunch with Santa today, so Jim and I took the boys to see Santa Claus. Ethan wasn't sure what to think so he sat with Jim on his lap.

The Fun Continues

So we have just started what will be our "regular" routine. Ethan wrapped up daycare and is now home full time. He and I made cookies Grandma bought last week, we read the same book several times and danced to music on the iPod. I think he should be more tired, but doesn't seem to be even though mom is:).

We also took Jayden's photo to match a similar one I took of Ethan at this age. Jayden is now more than two weeks old already - craziness! Anyway, time for a walk.

Welcome Jayden!

On Thursday afternoon we welcomed Jayden Robert to the world. He weighed a healthy 7lbs 12 oz and was 21 inches long. Mom and baby are doing well. Ethan is slowly adjusting but I think he likes his brother alright:).

Jayden in August

So here are some recent ultrasound photos. One of Jayden on his back and one of Jayden's feet.