Wyatt Joseph Forte

2011-09-09T14:46:00.000-04:00

I can't believe how long it's been since the last post- I never even put up his birthday pictures! Not much to report health wise with Wyatt... he is still eating a decent amount of his calories by mouth (about 50% g-tube/50% oral). He still loves mac n cheese, hot dogs, and strawberries- typical 2 year old food. We were able to stop his overnight feeds through the pump, making our night routine a lot easier. We were even able to finally move him out of our bedroom after 2 years. He and Ryan are now sharing a room- something they were both really excited about, "super cited" as Ryan said. We met with Surgery and Nutrition this week after a 2 month break. They were pleased with him overall, but disappointed in his weight as usual. He is still hanging around 22lbs... gaining a few ounces since his last appointment. We are going to try to add a little formula back in to see if we can get some meat on his tiny little bones. It's hard enough to get enough calories into a kid with CDH, but he does not sit still for one minute. It would be hard to find a more active kid- he is constantly hanging or climbing on something in the house.

2nd Annual Ronald McDonald House Dinner

Wyatt's 2nd Birthday Party

Neither one of them has a clue how to steer that thing!

"Happy to you"

His new favorite hiding spot

Taking a little juice break

Trimming up his birthday mohawk

Ryan's family portrait- so cute! Yes- she wrote Carrie, not Mommy... no idea why.

So proud of her work!

Finally a nice enough night to dine outside

... or stand on the table!

Tough guy!

Hanging out in the house!

Strutting his stuff in the cul-de-sac with nothing but his favorite socks!

SO excited to visit her school this morning- getting ready for her 1st day of Pre-K on Monday!

Wyatt eats!

2011-06-25T21:58:00.013-04:00

Who would've thought a virus would be the best thing that's happened in a long time... Wyatt had a nasty stomach bug last week. We did the same thing we do every other time something like this happens- cut his gtube feeds to pedialyte and slowly work them back in over the next couple of days. He basically went 24 hours without food, just pedialyte to keep him hydrated. The next morning he woke up, sat at the breakfast table with Ryan and tried to steal her blueberry waffle. He sat there saying "waffle", "cereal"- "juice"! He was finally feeling what it was like to be hungry and understood what it was. He ate half the waffle, a handful of cheerios and his juice- the most he's ever eaten! The rest of the day went pretty much the same way- he kept asking for food and ate most of what we gave him. I waited until the end of the day to email Robin (his nutritionist at CHOP). I gave her the rundown and at the end of my email I asked her if we could just go with it for a few days and see what he would do. She ran it by Dr. Blinman and called me a few minutes later, laughing at the fact that once again Wyatt has done things on his terms- the same kid that required TPN only a few months ago. They agreed to give us a week.
We had him weighed the next morning to determine what he lost because of the GI bug, not because of the drop in feeds. It was a good thing we did- he lost about 8 oz in 2 days. He continued to eat a ton (for him) over the next week. This past Friday was the official weigh in. We were really disappointed to find out that he lost another 9 oz. or so, bringing him back down under 21 lbs. A reminder of how many calories kids with CDH need! We thought he had to be getting the calories he needs, but it only ended up being 60% of his daily needs when she calculated his food journal. They were thrilled with his progress, but obviously not happy with the loss. We ended up having to add 3 of his gtube feeds back in. Disappointing after 10 days without the tube, but still much better than the 7 feeds we were giving him a few weeks ago. It's pretty crazy to see him go from being 100% gtube dependant to 40% in a matter of a few days. Today was the 1st full day we added the tube feeds back in and it doesn't seem to have affected his appetite. Let's hope we found the right balance for now!

Ryan celebrated her 4th birthday a few weeks ago. A big deal for us because it meant no more bloodwork appointments every 6 weeks! Four is the magic number when it comes to Hepatablastoma- we no longer have to screen her for this type of cancer! She will still go every 12 weeks for ultrasounds to screen for Wilm's Tumor, but even those are shorter (no longer looking at the liver) and she doesn't have to fast for them either. I think she's actually going to miss them- she loves going to "the big hospital" for her "baccinations". She gets lots of special attention, gets to pick out a special bandaid and sticker and usually gets a treat at McDonald's when she's done- what's not to love.

Onward and Upward Day at her preschool

2011-05-04T10:19:00.000-04:00

Wyatt had a full day at CHOP yesterday. We got a call a few weeks ago asking for our participation in a new research study they are doing. They are looking more into the anatomy of the lungs of CDH babies, and whether or not they would benefit from certain medications to improve their lung growth/function. Unfortunately they weren't able to get most of the information they were looking for yesterday- Wyatt woke up in the middle of the test. We're hoping they will be able to change the protocal a little and let us come back for the rest of the test in a few weeks. He did get a good report from the Pulmonologist though- his lungs are functioning a little better than they were a year ago. He still recommends using the 2 inhalers twice a day. We also had a great appointment with Cardiology- his ECHO and EKG looked really good.
We came up with a plan to try to get him to start eating a little more by mouth at our list visit with Dr Blinman and Robin. At this point he is still getting almost 100% of his calories through his g-tube. The 16th of April was his 1yr g-tube "anniversary". It's a little disappointing to still be relying on the g-tube for all of his calories at this point, but hopefully the changes we are about to make will improve that. We are going to try to eliminate 2 of his bolus feeds during the day. That leaves him with the 3 he gets overnight and 2 more during the day. We are going to try to give him the 2 daytime feeds while he is napping so he's not aware of any of the feeds going into his tube. He's definitely really full from all his feeds through out the day but we are hoping some of it may be psychological, and if he doesn't see them he won't know he's being fed. He's at the point where if you tell him it's time to eat he lifts his shirt, rather than sit at the table. He will have to get a weight check at the pediatrician in 2 weeks. As long as his weight doesn't plummet we will keep trying until his next appointment in June. We also started talking about a feeding program in Hershey. Most kids have great results from their program, but we are really hoping we won't have to do this... cross your fingers for a good appetite!

2011-03-23T11:34:00.005-04:00

Just pictures this time...

Wyatt is ready for bed when he climbs up into the chair with his "pac" and "moon" - his new favorite book Goodnight Moon

Poor Nash

One is not enough sometimes!

Hide and seek- our favorite game

2011-03-04T21:34:00.006-05:00

A bunch of pictures from the last few weeks...

He will make himself comfortable anywhere when he is ready for a nap!

Someone got into my eyeliner

Nap time again

He loves her baby stroller!

His 1st shiner... I don't think a week goes by without a good fall

It's been fairly uneventful the last few weeks... not much going on other than a couple of follow up visits. Ryan met with her Oncologist at CHOP's Cancer Center a couple of weeks ago. She receives all of Ryan's blood work and ultrasound results every 6 weeks, but we go check in with her every February. It's not one of my favorite appointments to go to. It's sad to walk into a huge room full of kids and their families and know why each of them is there.
Wyatt also had his 18 month well visit at the Pediatrician last week. He pulled out all of his tricks for Dr. Nicholas and was given a good report. He also got his last synagis, thanks to him for going out of his way to come up with one. Hopefully his next appointment at the end of the month with Dr. Blinman will go as well.

2011-02-11T10:51:00.010-05:00

Wyatt had his 1st Neonatal follow up appointment last week since leaving the NICU. He should have been seen by them a couple of times by now, but all of his complications have kept him from following the normal PHP (Pulmonary Hypoplasia Program) appointments schedule. They were really pleased to see how well he's now doing, given his extensive history since his rock star recovery in the NICU. It's always interesting to meet a new doctor... Wyatt is never what they expect him to be when they look at his history- his chart is pretty impressive. He went through a full developmental evaluation (a series of "tests" with a Psychologist) and another evaluation done by their Pediatrician. Overall they said he's doing really well in his development- "cognitive, receptive language and fine motor skills are in the average- low average ranges." They feel he has a mild delay in expressive language and told us to encourage word approximations before giving him what he wants (he points and makes noises at things most of the time rather than using words). They also gave us a baby signs book so we can start signing with him for certain things. We weren't really surprised to hear this- he has a big sister who never lets him get in a word. He's pretty quiet, but he uses words when he wants to. He'll get there. They want to see him back there in about 6 months- they will probably recommend Early Intervention services if he still shows a delay.
Wednesday morning was also his last session with his Early Intervention therapist. She came out with the coordinator of services for a review and they decided that there was nothing more they could do for him right now. They feel that his feeding issues at this point stem from the fact that he never has a chance to feel hungry because of his g-tube feeds. He's definitely getting better as far as trying things and picking at his food a little bit. He will put little pieces of whatever we are eating in his mouth, but he still has a hard time actually chewing them up and swallowing them.

2011-01-25T14:34:00.007-05:00

These were taken back in November... we were trying to get a Christmas picture of the kids, but ended up getting some great ones of all of us. I don't know what I was thinking- expecting the kids to sit there by themselves for a nice portrait by the water. My friend Steve took the photos for us (http://www.lookingglass-photo.com). I just put together a collage for our house of my favorites, so I thought I would post them too.

Wyatt is 18 Months old!

2011-01-20T16:20:00.013-05:00

Today is Wyatt's 18 month "birthday" and he is finally 20lbs!!! He had a great appointment with Dr. Blinman and Robin yesterday. He gained 1 pound since his last visit with them and is finally on the charts (in part because of his weight gain, but also because the WHO changed the growth curve). Whatever the reason- we're excited that they're excited.
For as long as I can remember the Doylestown Shopping Center (where I work) has had a little Santa house set up from Thanksgiving- Christmas for the kids to have their photo taken with him. Families are asked to give a donation for their picture and every year they choose a charity to receive the donations. This year it was decided that Wyatt's home away from home should benefit from the donations, so I set up a meeting with the Director of Development at CHOP to see how the money should be allocated to best help kids like Wyatt. We considered the Special Delivery Unit and the NICU, but Dr. Blinman and Robin have been such a huge part of Wyatt's care over the last 18 months. He has become more like his primary physician so we decided that he was the man to receive the funds. Yesterday we were able to give them a check for almost $2500! The money will benefit his SIX Clinic.
Another little CDH baby was born last week in Pittsburgh and has been having a bit of a rough time. Please send some good thoughts to baby Ramsey and his family- they need it right now. http://rootingforramsey.blogspot.com

Poor guy doesn't have a chance!

Singing in the mirror with Dylan!

I love this picture of Ryan at 18 months old- not to compare or anything, but this little pudge was almost 28lbs here!

2011-01-18T13:45:00.004-05:00

Not much to report lately... Wyatt has been pretty "stable" since Thanksgiving. We are still working on his bolus feeds- we've been able to figure out what timing and amounts work best for him and he's keeping most of his feeds down. The soy based formula has made a huge difference in his digestive issues. We're just hoping this has made a difference in his absorption, and the scale will be kind to us at his appointment tomorrow. We have an appointment with Dr Blinman and Robin (Nutrition)tomorrow at 8am. This has been the longest amount of time we have spent away from CHOP.
We have pretty much given up trying to deal with the idiots at Keystone Mercy. We went through the process of the second appeals hearing. I got a letter 5 days later (the only way they communicate- you have to wait 5 days to hear from them) stating that they upheld their denial. Wyatt has been classified as having "mild" chronic lung disease and his pulmonary hypoplasia was not significant enough for them to consider him a candidate... ridiculous. We are so lucky to have a pediatrician who goes out of his way to try to come up with a shot for him every month. He's already set up with an appointment for February's dose, so hopefully they will be able to keep them coming through the RSV season.

2011-01-05T21:00:00.000-05:00

Finally got a chance to upload some pictures from Christmas weekend. The kids had a great time... Ryan was SO excited for Santa this year and had so much fun opening gifts for her and Wyatt.

Getting ready for Santa

Everything HAD to be Dora this year for Christmas!

... and lipsticks!

Finally- a sippy cup that he will "drink" from

"It's snowing!!!"

Merry Christmas!

2010-12-23T21:59:00.000-05:00

This year's Christmas card

We had an appointment with the Pulmonologist yesterday... we haven't seen him since July. He was happy with Wyatt's breathing and has us continuing the 2 inhalers twice a day. He also prescribed a nasal spray- as needed, he's been sick for about a week so we will give it a try. It should help cut down the amount of mucus, maybe helping the vomiting a bit. He's never diagnosed Wyatt with asthma, but he responds better to the rescue meds (albuteral) and flovent so continuing to give them on a regular basis rather than as needed seems to be the plan for now. We will go back in a couple of months for another check up and a Pulmonary Function Test.
We are still fighting with Keystone Mercy regarding the Synagis shots... luckily Wyatt was able to get one from the pediatrician's office at his routine visit a couple weeks ago. There was an extra... I'm not sure how they came up with an extra $2000 shot in the office, but we were happy to have it. That bought us another few weeks to fight for coverage. There was another hearing the afternoon. One of the nurse practitioners that sees Wyatt was nice enough to represent us on her day off- so we were patched into a call with 5 "professionals" that will vote to decide if he is eligible for the shots. They didn't seem to have a clue- we'll see what they decide. The paperwork speaks for itself, and they disregarded that the first time based on the fact that he is not a premie. That's the #1 criteria for the shot which doesn't make much sense to me. We've been given copies of all the letters sent by Surgery, Pulmonology and his Pediatrician- the closing statement of one letter pretty much sums it up...
"It is our medical opinion that Wyatt needs to receive the full course of Synagis vaccine this winter and that without it, he is at high risk for grave consequences. There is no alternate to this plan of care."
We were able to make a nice donation to the Ronald McDonald House after our appointment. Thank you to the CB East Cheerleading team for helping us collect some really great things for the families staying there over the holidays! I will post a few pictures soon :)

So proud of her school projects!

Somebody was pretty excited to get in the tub!

2010-12-16T19:06:00.009-05:00

Wyatt had a decent appointment with Dr Blinman yesterday. He maintained his weight for the last 2 weeks... gained 3 grams actually. I guess it's better than a loss, but 3 grams is basically nothing. We are trying another new med at night, hopefully this will be it. He's definitely getting better- we just need to get his vomiting under control. It's traumatic for him and can't be good for his esophagus. He almost always vomits first thing in the morning, just as soon as his last feed is finishing up and one or two more times throughout the day. This new med should help with that and hopefully those few calories that he's wasting will be enough to push him over the hump and he'll be back to gaining weight. Everyone agrees that he looks 100x better than before the TPN- those couple pounds made such a difference in his appearance.

Ryan had her Holiday concert at school this morning. She ended up having such stage fright- she wouldn't say/sing a word! She wasn't her usual self... trying to take over the show although she did manage to yell out that her nose was running in the middle of a song- bringing everything to a halt while her teacher got her a tissue. It was hilarious! She then decided to announce that she "Needed to pee!" in the middle of the next song, stopping everything once again while they brought her off the stage so I could take her to the potty. She didn't even have to go... I'm not sure what that was all about, but it was funny and made the video a little more interesting.

2010-12-12T20:40:00.004-05:00

Not much new to report... Wyatt was given the week off as far as appointments in the city this past week. He did have an appointment at the pediatrician- finally his 15 month well visit. A little late, considering he's almost 17 months old- but we had to cancel an appointment or two while he was in the hospital. Their numbers put him in the 15th percentile for length and the .64th percentile for weight (would it have killed them to round up and say one?)... we'll see what the "official" scale says on Wednesday. Dr Blinman's office uses one scale and the same woman weighs and measures him every time, so it's the only one that counts. He's doing everything they expect him to be doing at this point, other than eating. He has a few words- his favorites other than Mom and Dad right now being uh oh, Nash, Pop Pop & Bob (our neighbor). He has a word for Ryan I haven't figured out yet.
Thank you to everyone who has donated to the RMD House Wish List! We will be making our delivery next Tuesday after Wyatt's appointment with pulmonary for anyone else who would like to contribute.

2010-12-01T22:24:00.002-05:00

Philadelphia Ronald McDonald House Holiday Wish List 2010
http://www.philarmh.org/get-involved/help/hold-a-wish-list-drive/

Most of you already know that Jason and I spent about a month staying at the RMD House in Philadelphia after Wyatt was born. This was a lifesaver for us during that time, so we try to give back whenever possible. The above link lists a bunch of things that the house is specifically requesting at this time, although donations of any kind are obviously welcomed... they do ask that all items be new and unwrapped. There are lots of items listed from things for the house to gifts for the children staying there over the holidays. We would love to get together a few things to drop off after one of our appointments in the next few weeks. Please let me know if you would like to contribute.

Wyatt had a great appointment with Dr Blinman this morning. He gained a few ounces this week- even though we are still having trouble keeping a few of his feeds down. He seems to be doing well with this new formula- it's the 1st soy based formula we've tried and so far it's helping a lot of his digestive issues. He still throws up a few times a day so we've been trying to figure out what works best with the timing of his bolus feeds. They were so pleased with his progress this week- next week is a free week for us, no appointments... hopefully he keeps this up!

2010-11-28T16:42:00.000-05:00

Happy Thanksgiving! We have a lot to be thankful for this year... Wyatt is most thankful for his first bath in almost 7 weeks the other day! He decided to perform a little procedure on himself on Tuesday morning. The homecare nurse was coming out on Tuesday morning, so I went to change Wyatt out of his jammies and get him ready for his dressing change. I opened up his jammies and almost had a heart attack when I realized that his entire broviac line was gone! I don't know when or how he pulled it out, but luckily he did it in a way that didn't cause any major damage. It was perfect timing- the nurse pulled up a second after I realized what he had done, so I wrapped him up in a blanket and ran him out to her car like a crazy person. I caught her off guard too- it took her a second to get herself together and figure out what to do. She was able to take all his vitals and check him out to make sure there wasn't any internal bleeding or anything. We originally thought that we were headed right back to the hospital, but they told us to hold off and wait to see what Dr. Blinman said at his appointment the next day. It was pretty obvious that he was fine. Pretty happy with himself actually! He agreed to let Wyatt try to get back to full g-tube feeds again. Friday was his first day at the full amount and he's been doing ok, so we'll see what the scale says on Wed. He had lost another few ounces as of last Wednesday's appointment- hopefully this one is better. Our life has been simplified SO much by stopping the TPN- it would be hard to go back to, but if his weight doesn't come back up we may not have a choice. Don't get me wrong- he's back to eating just about nothing and he pretty much refuses to drink anything out of a sippy cup, so we are back to giving his 7 bolus feeds within a 24 hour period, which becomes pretty time consuming- but nothing like 14 hrs of TPN. Going back on TPN would mean another surgery- another stay in the hospital- which is getting to be pretty scary with RSV season creeping up on us.
Keystone Mercy upheld their denial for Synagis... we are still fighting, but they are giving us a hard time. I'm pretty sure they will come around, but it may get to the point where we have to pay for it up front and fight with them for reimbursement. We'll see what they say at clinic on Wed. It sounds like Keystone Mercy is the hardest insurance company when it comes to Synagis... which is ironic because they deal with most of the chronically ill children in PA- the only reason Wyatt is insured through them.

2010-11-21T21:45:00.005-05:00

After two long ER visits this weekend at CHOP, Wyatt is home once again. The nurse came out on Friday for his regular dressing change (they started coming out twice a week now) and noticed that his central line had a split in it. He called down to CHOP and of course they said we had to head down there. Luckily it was just the outer casing, so there was no blood involved. Jason and Wyatt spent an hour driving each way, stayed over four hours in the ER and got home late Friday night just to find out on Saturday morning that the repair didn't hold! So they did the same thing all over again yesterday... only this time they had to cut the line, repair it, wait four hours and then start antibiotics. They got home after 10:00 last night- which made for a long morning. Wyatt was hooked up to his TPN until 12:30 this afternoon. We have to be especially careful with his line now that it's already been repaired- no more letting him walk around a little bit while he's hooked up, we have to hold him the whole time.
I still haven't heard from our pediatrician if the Synagis has been approved. I have to remember to call tomorrow.

2010-11-17T21:37:00.000-05:00

Keystone Mercy had their hearing on Friday morning... I'm still waiting to hear the decision. They called at 9am and set up a conference call with me, someone representing the insurance company and a few doctors. I was under the impression that they were just calling during the hearing with any other questions about Wyatt's health history so I was a little surprised when they said they were ready for my prepared statement (and to please keep it under 10 minutes). I probably could have laid it on a little thicker had I prepared something, but I just gave them the basics including the fact that he had been at CHOP 15 out of the last 30 days when they denied our 1st request.
GI called yesterday to say that from a pathological standpoint everything looked great. The biopsies were all normal. So I guess we keep looking... trying to figure out why he's had diarrhea for just about his whole life and why he requires so many calories to gain weight, but has such a hard time processing that amount of calories. He also had his weekly appointment with Dr. Blinman and Robin (Nutritionist) today. He lost a little weight, which they weren't surprised about... they reduced his TPN last week- thinking that he would be getting overnight feeds, but he's been vomiting again so he didn't make up for those calories. Dr Blinman agreed with GI- there is nothing else "wrong" with him- every test came back normal. It's crazy to say that we were a little disappointed by this, but I kept thinking they were finally going to see something they have been missing. So- new plan is yet another formula and no more continuous feeds overnight. They think that for some reason he may not be able to handle them. We are going back to 4 bolus feeds in 24 hours- hopefully 2 of them will be overnight. We'll see!

Ryan finally got her big girl bed last weekend. She was so excited, she didn't want to wait for us to put the actual bed together- she slept right on the floor.

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at the rock gym... they wouldn't let Wyatt walk around without a helmet on. Poor kid couldn't hold his head up!

No fear- she climbed right up to the top!

Tough guy showing off all his accessories

Headed home!

2010-11-10T12:23:00.007-05:00

Wyatt sitting in his window watching all the bikers for the 30th annual ABATE Toy Run
http://www.delawarevalleyabate.org/toyrunhistory.htm

Last night didn't go as well as we hoped... Wyatt did end up throwing up a few times and having a hard time back on the gtube feeds. I think they are afraid that I would lose it if we had to spend another day/night in the hospital, so they decided to let Jason bring him home this afternoon:) We are going to keep working on his overnight feeds while we wait on the results of all his tests. Hopefully his stomach just needs to ease back into the idea of being pumped with formula.

We were having a conversation in the hospital about the cost involved with Wyatt's care... his insurance company refused to pay for his Synagis shots this year. We had to have the pediatrician, surgeon and pulmonologist all write letters stating that his health was at risk if he did not receive the shots. (Synagis protects him from RSV- a respiratory virus that will land us right in the hospital if he gets it). I got a call yesterday letting me know that they will have a hearing on Friday morning to decide if they are going to cover it. It's a pretty expensive decision- it's approx $2000 per month over 5 months. That $10,000 expense is a whole lot less than another hospital stay though! I don't know how much it is per day on the regular floors of the hospital (the ICU is $25,000 a day). I just stuffed our trash can with $7,000 worth of TPN- it costs $1,000 a day for his "food" and since he spent so much time in the hospital we can't use last week's bags. Everyone always wonders how we do it- we would have lost our house a long time ago if this costs weren't picked up by insurance! We are really lucky to have almost no medical expenses, although these hospital stays are catching up with us- missing work every time we turn around. Thank god our schedules are pretty flexible- I don't know how a family with 9-5 jobs would survive.

2010-11-09T13:27:00.002-05:00

Wyatt ended up having his procedures early this morning. The nurse came in and woke us up at 6am to let us know that there was an opening at 7am. He was in and out of the OR in less than an hour, and did really well coming out of anesthesia this time. Everything looked pretty normal during the endoscopy and colonoscopy, so now we just have to wait for the blood work and biopsies to come back to see if there is anything to treat. We were hoping to go home tonight, but they want to try starting his gtube feeds again overnight. He hasn't been getting any formula in his tube since he started the TPN- last week was the first attempt at gtube and TPN and it did not go well. Hopefully it goes smoothly tonight and we can get out of here tomorrow.

Back in the hospital

2010-11-08T09:50:00.000-05:00

Wyatt was admitted again Friday morning. He had a great appointment on Wednesday, he gained a few more ounces and they were really happy with him once again. He started with a fever on Wednesday night, and by Friday morning it was up to 103.9- so Jason took him down there so Dr Blinman could check him out. Now that he has the broviac, he is at an increased risk for infection so any fever is a big deal- especially that high. They admitted him right away- saying that they needed to start 48 hours of antibiotics and cultures to determine if there is an infection. That has now turned into a ton of testing and doctors- trying to figure out what is going on with him. Most of the cultures have come back negative- pretty much ruling out an infection in his central line. They removed the signs from his room requiring all the staff to wear gloves, masks and gowns when they come in- his tests came back ruling out most of the viruses that he could have picked up during his last hospital stay. We met with the immunologist yesterday- they are going to run a bunch of tests to rule out problems with his immune system. GI came in to see him this morning to set up a few tests for tomorrow or Wednesday. I think they are going to do a colonoscopy and endoscopy. Hopefully we will finally have some answers after all this- these long hospital stays are getting old!

more Halloween pics

2010-11-02T15:44:00.000-04:00

Don't let her fool you.. she switched sticks with Wyatt!
Ryan's Halloween parade at school

Checking out her work... she did a great job drawing his face
"Cheese"- he is such a little ham!
Trick or treating

Wyatt tried to let himself in every house

Happy Halloween

2010-11-01T10:33:00.000-04:00

Photos from The Doylestown Shopping Center Halloween Parade last Saturday. Ryan and Wyatt actually won 1st prize! Everyone loved Ryan's idea to be "Docker Ryan" and "her boy nurse Wyatt". I have a bunch of pics from this weekend too- I'll try to post more tomorrow.
Wyatt had another great appointment on Wednesday. He gained another 1/2 lb or so. They were all really pleased with his progress since he started on the TPN. Now we just have to figure out why he was having such a hard time absorbing calories the "normal" way. We have been keeping a food journal of everything he eats, mostly for the nutritionist to determine how many calories he's getting, but it will also help figure out if he has any food allergies or issues. We'll see how he does this week.

2010-10-20T21:17:00.002-04:00

Wyatt had his first appointment this afternoon with the surgeon and nutritionist since we left the hospital. It was also the best appointment he's ever had... he had his biggest weight gain ever. He gained 37 grams a day since his last weight check- I always ask them to talk to me in pounds... he weighs 18lbs, 4.5oz! They were really happy with his progress. We are still doing 14 hrs on the TPN and it seems to be helping his nausea- it's a challenge for all of us, but at least it's paying off.

As promised- just a bunch of pictures from the weekend

2010-10-19T16:04:00.006-04:00

2010-10-18T21:45:00.001-04:00

We took our very long and overwhelming TPN classes on Wednesday and Friday and came home Friday afternoon. There is SO much more involved in the TPN and Broviac than we expected. We weren't really prepared for the amount of work that goes along with having a central line. We have been getting a little better with balancing it all at night and trying to figure out the best time to have him hooked up for 12 hours. It would be a lot easier if he actually slept for 12 hrs, but not our kids. He usually falls asleep around 8:30 and gets up around 7am. This basically means we have to figure out if we want to hold him for a couple hours when he wakes up or before he goes to bed. Once he's hooked up it makes it really hard to follow him around with the pole/pump. It comes with a backpack that's bigger than him- so that's not an option.
I emailed Robin (the Nutritionist) this morning because he vomited the last 2 mornings right around the time that the pump was about to turn off. Dr Blinman is worried that his blood sugar may be dropping too fast- they tested him in the hospital an hour after coming off the TPN and his level was pretty low. It wasn't what we wanted to hear today- the answer is to add 2 more hours to the amount of time he gets the TPN! He needs more time to taper down the amount of glucose he gets. Not that we had much of a life before, but now we are basically confined to the house from 6pm- 8am with one of us holding him any of that time he's awake. It's even more complicated when you realize it takes about 25 mins to prepare the TPN for the night and we actually have to work sometimes. I'm sure we'll get used to all this- just like we got used to everything else the poor little guy has gone through.
Other than all that- everything is going well. He's back to being a crazy little almost 15 month old. We went apple picking on Saturday and to the pumpkin patch on Sunday. I have about a million pictures from the weekend- I will try to post a few from work tomorrow.

2010-10-13T14:41:00.003-04:00

Wyatt before surgery... flirting with the nurses in the hallway

What a long week trying to keep Wyatt occupied! It's exhausting running after him, making sure he doesn't pull the line out. He has been connected 24 hrs a day since Monday- he'll have his first break from the TPN tomorrow afternoon. They have to gradually get it down to 12hrs on/ 12 hrs off- which will be his normal schedule once we get home. He doesn't sleep for 12 hrs, so we'll have to figure out if it's easier to deal with it him being connected for a while in the morning or at night before he goes to bed. We have our first class tonight about the Broviac, and another 2.5 hr class on Friday morning. Hopefully he will be discharged after the class and we'll be home on Friday afternoon!

2010-10-11T11:40:00.001-04:00

Wyatt had his surgery at around 8am this morning. It was an early morning- we had a 6:15 am arrival, but we were happy to get it over with. He did pretty well... although the medication they used in the pre-op room did not agree with him. He was great at first- totally out of it and acting hilarious, but when there was a delay getting to the OR he turned crazy! It's a good thing he's only 17lbs- we would have had a hard time controlling him if he was much bigger.
The surgeon came out within about an hour to let us know that everything went well. The nurse came out to get us pretty quickly too- they had a hard time with him when he woke up- he was still really pissed! He finally calmed down and fell asleep after a few doses of morphine. Other than that, everything went as planned- he made a small incision in his neck, ran a line under his skin and brought the IV out under his arm. He said he really knew he was doing the right thing when he got him undressed on the operating table and saw how skinny he really was. Dr Blinman has some other tests planned while we are here- let's hope we get it all figured out and this will be our last CHOP stay. I have a feeling this one is going to be a rough one. He's going to be bouncing off the walls in no time!
Here are some photos I uploaded a few days ago and never posted.

2010-10-01T10:33:00.002-04:00

We've had a crazy week... it started with a phone call on Saturday about Ryan's ultrasound and blood work done last Friday. They noted a "shadow" on her liver. We were told almost right away that it wasn't a tumor, but not much more than that. They suggested that we run more blood work to rule out hepatitis, etc. Our pediatrician added a few more tests to the liver function test just in case, and everything came back normal. He ran it by a GI specialist at CHOP and his recommendation was to follow up with another ultrasound and labs in a few weeks. She's due for labs in 5 weeks, and her ultrasound in 7 weeks- so hopefully there will be no change... unless it just disappears, which would fine by me!

Wyatt had an appointment with Dr Blinman yesterday. He's hit a plateau as far as his weight gain. He gained a few ounces in the last month- which doesn't make any sense considering the amount of calories he is getting overnight. They determined that his gut (he keeps saying gut, not stomach- I don't know the difference between the two) needs a break. He's not absorbing properly because his gut is working so hard to keep up. Unfortunately, the only way to give his gut a break is to bypass it all together. This means putting in a central line and giving him TPN fluids for a while, so it looks like we'll be trusting Dr Blinman with our little man for the 2nd time in 6 months. He'll go in for surgery on the 11th- they will tap into a vein in his neck, and run a line down his chest (under his skin). The IV will come out somewhere under his arm so he can't pull it out. He'll be in the hospital for 5 days or so... we'll take a class on how to manage it while he's there. It should be good for him- he'll get all the nutrition he needs to gain weight, without being too full to think about eating solids. He should probably just feel better all around- he won't have a stuffed belly all the time. The goal is to give him the TPN for about 3 months- the maximum amount of time before it starts to do more damage than good. Within that time he should start to pick up eating and drinking on his own. Hopefully he'll develop enough of an appetite to maintain his weight gain on his own. We won't be using his g-tube at all for those 3 month (except to give his meds), but we may have to go back to sneaking extra calories into him overnight again if he can't keep up on his own. A nurse will come out once a week to check his IV site, and I think we'll have to go down town once a week to check in.
It sounds like a good plan- let hope it works out that way :)

2010-09-20T15:53:00.006-04:00

We went to the zoo on Sept. 11th with our friends.
Ryan and Wyatt checking out the new baby giraffe. Wyatt has a Little People giraffe he carries around and calls "bouf"- it's one of his favorites.
He kept trying to steal Ryan's chocolate eclair bar- I thought he should have his own...
... not the best idea. There aren't enough wipes for a job like this, and trying to hose him down in the bathroom at the zoo- gross!
He got a new little "bouf" to take home... thanks Chris and Kara!
So cute!
Ryan started preschool last week. We're a little nervous about the extra germs this brings into our house. This will be good for her though- she's always been home with us. So far she loves it. Hopefully we'll be able to stay healthy this fall and winter- Wyatt still can't afford to get sick! Jason and I still have to get our flu shots, but the kids both got theirs on Friday. Wyatt will start getting the monthly synagis shots again soon to protect him from RSV. We will continue with the Flovent inhaler for the next couple of months in addition to the Albuterol inhaler and Claritin... we'll check in with the Pulmonologist in December ( if not before) to see how he's doing.
We have an appointment with Dr Blinman on the 30th... send good thoughts our way for a big weight gain this time! We need to beef this kid up for the winter :)

2010-09-02T12:25:00.013-04:00

Wyatt is finally 17 lbs! He had a visit with the surgeon and nutritionist yesterday... he gained a pound in the month between appointments! This is by far his biggest weight gain- he still has a lot of catching up to do, but hopefully we're back on track ( for now). I was hoping that they would allow us to back off his overnight feeds a little bit... to give him a chance to catch up developmentally with his eating. He wants to eat- he's just so full from all the formula he gets throughout the night. It makes it hard for him really have much of an appetite all day- he's so sensitive to all the calories he's getting. They decided not to make any major changes yet, this is working for him and their biggest concern is getting some meat on his bones!

Wyatt and Ryan riding their horses "Lucky" and "Other Lucky"

Wyatt has taken over Ryan's chair as his nap spot
Cruisin the house!
A few pieces of spaghetti actually made it into his mouth
Wyatt's driveway artwork

Ryan and her new bike! She would ride this all day long if we let her:)

2010-08-17T15:36:00.006-04:00

What a difference a year makes! Last August 14th, we were celebrating Wyatt's homecoming. This year Wyatt and Ryan were in their first wedding. My youngest sister, Alison, got married at a beautiful farm in Fogelsville, Pa. We had a great weekend away! I'll post more wedding pictures soon.

2010-08-02T14:47:00.003-04:00

Wyatt LOVES icecream! In fact- I don't want to jinx anything, but he's starting to actually like a lot of food. He has made huge progress as far as food is concerned over the last couple of weeks. He finally realized what he's been missing out on when he tried that buttercream icing on his birthday cake! He's even taking some baby foods for the first time since his last surgery in April. We went out for icecream 3 times last week... the calories are great for him, maybe not so much for the rest of us :) He's drinking 4-5 oz bottles at a time... not much for a "normal" baby his age, but huge for him. He looks forward to his bottles now for the first time. We have a great Nutritionist and surgeon at CHOP and I think we may have finally come up with the right concoction for him. He's still getting a large amount through his pump overnight, but we are rarely using his tube during the day- mostly for his meds.

The bad news is that he still hasn't managed to gain an ounce... he actually lost a few over the last few weeks. Dr Blinman (the surgeon) let him slide last week- he was so happy with his progress otherwise. We'll go back next Thursday for another check.

2010-07-26T10:47:00.016-04:00

Wyatt had a great 1st birthday party~ surrounded by all of our friends and family who helped get us through a long year! We were so happy to be able to celebrate with all of you! Here's to a little easier 2nd year ahead of us:)

Wyatt is ONE!!!

2010-07-21T10:45:00.010-04:00

We had a great day yesterday. We prepared and served dinner to all the guests staying at the Philadelphia Ronald McDonald House to celebrate his birthday. When we left there last year after our 1 month stay we decided to volunteer every year on his birthday.
We had a little "situation" the night before his birthday and thought we were going to have to take another trip to the ER- his mickey button (g-tube) fell out! Jason was changing him and it popped out in his jammies. Luckily he saw it happen and was able to get a new one in quickly- we called the triage nurse and were able to get it back in ourselves. That would not have been a fun way to celebrate his birthday!

He's been doing pretty well. He's still having trouble gaining weight though- a few changes were made after his last appointment to try to get him back on track. He only gained 4oz in 3 weeks- making him a whopping 16lbs, 10 oz... pretty disappointing considering he's not vomiting nearly as much as he had been and we know he's getting the calories he needs to gain. The pulmonologist wasn't happy with his breathing so he's back on Albuterol- hoping that will help his breathing and he won't burn as many calories in the process. They also started adding sodium and pectin (used to make jelly) to all his bottles- a little trick to help absorption also. He had a long day of testing- the pulmonologist, nutritionist, speech therapy, surgeon, cardiologist and EKG, a hearing test and finally at the end of the day they drew about 8 vials of blood- trying to get to the bottom of his possible absorption issues. Hopefully his next appointment will go a little better :)

Joanne, Leigh and I made cookies for Wyatt's "team" at CHOP to celebrate a long year and a lot of phone calls!

2010-07-02T10:32:00.001-04:00

One more picture from the Reunion

2010-06-29T22:27:00.014-04:00

Ryan taking Wyatt for a ride in her jeep~ he thought it was hilarious!

I decided to switch up the look of the blog in honor of our "rock star" birthday boy this month!
Here's a few pictures from a busy weekend...
Wyatt and I went into the city for a CDH Conference on Friday morning. We met some really nice people doing great things for CDH families and research. Mass General and Dhreams were there asking for participation in their studies involving CDH. They were taking blood and getting consent at the conference. All four of us will be involved in the study- they are interested in the "sporatic occurance" of CDH and BWS in our family... we couldn't decide if we should play the lottery or if we should wait to be struck by lightening next.
Sunday was the annual Fetal Surgery Reunion at CHOP. We met up with 3 of the families we met in the NICU. Wyatt and Madison both with CDH, and the two Avas. It was nice to see them outside the NICU and see how big they are all getting!

Wyatt and Madison

Wyatt and the Avas!

We're still in the "playing" phase with food~ it's in his hair...
in his ears... anywhere but in his mouth!

11 month photos!

2010-06-21T11:43:00.008-04:00

Wyatt is 11 months old! He's also finally 16 lbs too- 16lbs, 6oz to be exact! He finally had a little growth "spurt" the last few weeks- it might not be much, but we'll take it. He had another follow up with Dr Blinman last week. He is still having trouble with his reflux. Of course- he's one of the few patients to continue to have reflux after a fundoplication. He's already taking the maximum amount of prevacid, so they decided to add zantac to the mix. They also prescribed something to coat his stomach when he seems really uncomfortable. He's back up to 5 or 6 medications now, but keeping everything down for the first time in a long time :)

2010-06-14T22:35:00.007-04:00

Wyatt had a great evaluation with the Early Intervention therapists last week. Other than his feeding issues he is right on track in his development. He showed no physical, social or emotional delay at all... they actually gave him a cognitive developmental age of 16 months. I was a little worried he wouldn't cooperate with them- his appointment was right at nap time, but he had a great time playing with them and showing off all his "tricks". They want him to be "medically cleared" before they will start working with him though- making sure there are no swallowing/pooling issues. We have an appointment with Dr Blinman again on Thursday, and he will see the GI specialist again next week. They did give him a 90% adaptive delay based on his feeding issues- an age of 1 month... we still have a long road ahead of us, but hopefully things will start to turn around. We were given a few tips for dealing with the feeding aversions and so far he's been pretty good. They suggested making food fun by letting him play and get as dirty as we can handle while we're all sitting at the table. This is a little easier said than done being a little bit of a neat freak, and considering that we rarely get a chance to sit around the table as a family :)

2010-05-25T13:42:00.005-04:00

Wyatt's 10 month photo

His new "cheese" face :)

He's all over the place now!

Wyatt had another follow up appointment with Dr Blinman this morning. He need another Upper GI too... we were starting to worry that the surgery was unsuccessful. He got so sick right after surgery, we thought maybe he hadn't had enough time to heal before really testing the sutures. The good news is he doesn't need another surgery... the bad news is that he's still not recovering from the pneumonia. His esophagus is really swollen and his lungs still sound pretty bad, so they decided to put him on a steroid inhaler and claritin. Let's hope the warm weather brings him a little better luck this summer!

2010-05-17T16:12:00.004-04:00

2010-05-07T11:41:00.005-04:00

Wyatt is finally starting to recover from the virus he caught in the hospital... it took a while, but he seems to be feeling more himself. He had a post-op check up on Thursday- being sick really hurt his weight gain for the last couple weeks. He weighs less now than he did before surgery. Poor guy had a really hard time keeping anything down with all the mucus from the pneumonia, and the antibiotics he was on for the ear infection/pneumonia destroyed his stomach too... nothing stayed in long enough to absorb. Hopefully we're over that hump now and things will start to get back on track now.
We did get some REALLY good news regarding his health the other day though... there was a big scare for the last six weeks or so that Wyatt may have Cystic Fibrosis also. We weren't able to get in for the official test until Thursday- luckily we have a great NP through the PHP clinic who kept a watch for the results that afternoon and called us as soon as they came through. We may have had to wait until today to get them if she wasn't on the lookout for them. Wyatt's pretty well known around the office... so am I for that matter! I think they recognize my voice when I call now:) He's fine- we can move past that now and start focusing on his issues knowing that that's all we have to deal with. I'll try to post a few cute pictures from the weekend tomorrow.

2010-04-26T14:22:00.009-04:00

Wyatt is 9 months old... I never posted the photos with the update the other day.

... and nothing has changed, he still can't seem to catch a break- poor guy caught a really bad cold at the hospital and has been running a fever on and off the last 5 days. He went into the pediatrician this morning- she heard a little wheezing and prescribed a nebulizer. He doesn't have a fever today, but if it comes back she wants him to have a chest x-ray. She's worried it could be pneumonia. He also has an ear infection, so she started him on antibiotics for that- I guess they would take care of the pneumonia too. And he cut 2 teeth this weekend! He's just starting to pull himself up now... he so anxious to move, I think he may start walking before he gets anywhere crawling!

2010-04-20T09:51:00.002-04:00

Wyatt is home! We came home last night. We're getting used to his new "equipment" and feeding changes... he's still not able to eat much at one time. We'll slowly increase the amounts and hopefully eliminate a few feedings during the day- he's back to a newborn schedule of every 3 hours. Now we just need to start gaining weight!

2010-04-17T11:32:00.002-04:00

So far, so good... they are starting his feeds very slowly today. His goal was 30ml(1 oz) this morning and he took it no problem. We'll try that every few hours today and gradually work up to his full amount hopefully by Monday. He was awake and his usual smiley self for a while this morning- flirting with the woman cleaning his room :)

2010-04-16T14:13:00.003-04:00

Dr Blinman just checked in with us to let us know Wyatt is out of surgery and doing awesome. No pulmonary issues during sedation- so he's not even going to the ICU for recovery, straight to his room. He said he doesn't know how it could have gone any better. He called Wyatt's GI issues "impressive"- there was a lot of untangling to do. His stomach was twisted and folded to slide up into his esphagus, but he said it stayed nicely in place with 10 stitches after it was moved. He was able to place the g-tube at the end of his original incision and only used 4 other small openings for the procedure.
We'll update again after we get back there to see him :)

2010-04-15T17:43:00.002-04:00

Change of plans... we got a call back yesterday from the scheduling nurse for general surgery. Dr Blinman got Wyatt into his schedule for tomorrow. He's barely been able to keep anything down since Saturday. They were concerned that he would be too weak and dehydrated for surgery if they waited another 2+ weeks. We have a scheduled arrival time of 9:45 am, so I guess he should go into surgery around 11-11:30. They told us to expect it to take about 3 hours, so hopefully we'll be able to see him mid-afternoon.
I'll post an update when he's out.

2010-04-10T14:17:00.002-04:00

Easter 2010

We met with the surgeon on Thursday. Wyatt is scheduled for Monday, May 3rd... unless something comes up. They are going to check the schedule on Monday to see if anything can be done to fit him in. He hasn't been gaining weight and they are worried he won't be strong enough for surgery if he has to wait 3 more weeks. We are going to try a few more addititives to his formula for the next few weeks to try to bulk him up a little until the surgery. Dr Blinman decided to do a Toupet Fundoplication instead of the nissen we had been told about at our last appointment. He will take a portion of the upper part of his stomach and partially wrap it around the esophagus. Wyatt has other issues with his esophagus making him a poor candidate for the full nissen procedure (which we weren't sure about anyway). He expects the surgery to take about 2-3 hours for the hernia repair, the toupet and the g-tube... a little more complicated because of the CDH repair. We'll see what they say on Monday.

2010-04-05T14:44:00.014-04:00

Photos from Vacation... too many cute ones to be selective!

Wyatt's 1st time on a plane... finally cut his 1st tooth while we were away too

Phillies spring training game last Saturday

It was all about the snacks for Ryan!

Going to the beach ain't what it used to be!

CDH Awareness Day ~ March 31st... Wyatt sporting his turquoise ribbon

2010-03-24T16:23:00.010-04:00

So it looks like we may finally have the answer we've been looking for... Wyatt had his upper GI done Tuesday morning. It was pretty clear to the Dr right away that Wyatt has been struggling with a hiatal hernia as well. Basically his stomach is up in his chest again, but in a different way than with a diaphragmatic hernia. This isn't the cause of his severe reflux, but it definitely makes it worse. It also causes the milk to pool in his esophagus, which is probably why he vomits during some of his bottles too. It also puts him at a greater risk of aspirating into his lungs. Surgery is not going to be a quick fix- we're going to have to start all over again with his bottle feeding, but we are happy to finally have a reason for his problems with eating. Hopefully it's not too late to reverse the aversion to bottles he now has.

Dr Adzick has referred us to another general surgeon at CHOP- Dr Brinman, who they call a "laparoscopic guru". They are hoping to do a laparoscopic surgery to repair the hiatal hernia and at the same time do a nissen fundoplication to help his reflux. They will also give him a g-tube for feeding. Hopefully he won't need it for very long, you just never know how he will tolerate feeds after surgery. It will probably take him a long time just to get back to taking the little amount he takes by bottle now. We have a consultation with Dr Brinman as soon as we get back from Florida- not sure when they will schedule surgery though.

Ryan thought he needed some shades

The official 8 month photo in the chair

Snoozing during breakfast!

Wyatt is 8 months old!

2010-03-22T10:51:00.010-04:00

... and finally weighs 15 pounds! We met with CHOP's Feeding Team on Wednesday- they weren't able to tell us much about his eating, or lack of. It's hard to know if he is still really uncomfortable because of his reflux or if he's just sick of it hurting when he eats- so he's decided not to. He's having an upper GI tomorrow morning so that should help answer a few questions. Some cute pictures from this weekend..

His feeding tube has become his "lovey"- he holds onto the end of it all the time.

Saying "Da-Da"!

Yes- he has a mohawk now. Jason got tired of everyone saying he had a faux-hawk and decided to give him a real one.

Finally- a nice day for a walk around the block.

2010-03-10T10:48:00.002-05:00

Wyatt had another PHP clinic appointment yesterday. We started the day meeting the GI doctor- most of Wyatt's problems are GI related, but he hadn't actually met with them yet. He also had appointments with pulmonology, nutrition and the surgeon. He had a sedated pulmonary function test finally done for the first time as well. They were pleased with his lung capacity and development... most measurements fell exactly where they expected, only a few fell on the low end of normal. He does breathe fast which may have something to do with his trouble gaining weight, but isn't a problem otherwise. At the end of the day his feeding issues were the main concern and all the doctors decided to try to a different medication- they want to keep trying to treat him medically before they decide that surgery is the only option. He started to take reglan this morning- this should help his reflux and his appetite by emptying the stomach a little quicker. Hopefully this will do the trick and he can avoid a gastrostomy feeding tube in his belly. We go back for a follow up appointment in 2 weeks - right before we leave for Florida!
Sorry no pictures... I'll try to post some soon.

2010-03-04T15:07:00.003-05:00

We can't seem to catch a break with Wyatt... just when he gets over one virus, he ends up catching something else. I'm not sure where this one came from- the rest of us have been fine. Friday night/Saturday we thought something was going on with him, but we blamed it on the new medication. They decided to switch his reflux meds. The milk scan last week was inconclusive -he vomited all over himself 50 minutes into the 75 minute test, all it showed was severe reflux (which we already knew). We haven't been able to tell yet if the new medication is helping because he ended up with a GI virus of some sort. He got really bad on Tuesday so I called the surgeon to see what I should do... symptoms of rehernation can be the same as the flu so it makes it really hard to figure out when to freak out. Her thought was to check in at the pediatrician to see how they thought he looked. He was breathing fast and couldn't stop throwing up even with nothing in him, he was also really dehydrated. Her suggestion was to take him down to CHOP and let the ER doctors check him out. She called ahead to give them his history and let them know we would be there in the next 2 hours. They ran a bunch of labs and chest xrays and determined that he just needed a belly rest and IV fluids overnight. We finally got into a room after midnight, and by the time the nurses did his vitals again it was almost 2am. He fought his first bottle in the morning, but kept it down after I put it in his tube. He took a bottle around 2pm and held that down to so they let us go home last night. He seems to be feeling much better, still refusing bottles but that's the norm lately... we'll get to that on Tuesday at his next appointment.

Wyatt is 7 months old !

2010-02-22T11:39:00.000-05:00

Spring can't come soon enough! Wyatt and Ryan were both sick again last week. Wyatt's weight gain slowed down again with this cold- he only gained 5 ounces in the last 13 days. We decided to have a milk scan done this Thursday at CHOP. We were finally able to combine 2 appointments- Ryan will meet with oncology after his scan. http://www.chop.edu/service/radiology/nuclear-medicine/milk-scan.html This should finally give us a better idea of what is going on with his feeding. We are actually hoping they will find something "wrong" with him and this isn't just a behavioral issue he's having. He is still only averaging about half his goal by mouth for the day (13 of the 26 oz). He doesn't love solids yet either- plain oatmeal seems to be his favorite. He just started sitting up without support in the last week or so. He loves to sit in the middle of the living room and check out what everyone is doing... I can already see the trouble I'm in for once he starts getting around, he likes to get into everything.

~ I couldn't help but post so many photos this week... he's so funny lately! He and Ryan are so cute together. He LOVES his bath- I had to take him out before he drenched the entire bathroom kicking and splashing in the water! He is really into his pacifier right now to- yes, he feel asleep sitting up after I gave it to him the other day.

2010-02-04T17:28:00.006-05:00

Wyatt had his 6 month well visit this morning and finally put some weight!!! He's still not on the charts, but atleast he's getting closer. Too bad it's not because he's been eating so well lately though, it's only because we've been pumping an average of 8 ounces into his NG tube every night.He's now 14lbs, 2.5oz and 26.25 inches (2nd %tile for weight, 33rd %tile for length). Now we just have to figure out why he has no interest in taking a bottle!
We had our appointment with genetics yesterday too. It was really a follow-up appointment for Ryan. They like to touch base with us every year or two to make sure her ultrasounds and bloodwork have been going well. Everything looks great with her- they said she's growing really well. We literally have kids at both ends of the spectrum- kids with Beckwith can be off the charts too- just at the other end! She looks great though... pretty average at around the 50th %tile. We won't meet with oncology until her next bloodwork appointment in a couple weeks- it's a good thing she actually gets excited to go to the doctor's office... we'll see how long it takes her to catch on!

2010-01-25T10:35:00.001-05:00

Wyatt is 6 months old! I wish I got around to taking the picture the other day- before the tape destroyed his poor cheeks already.

So- I guess Wyatt was officially diagnosed as "failure to thrive" during his visit. They never actually said this to us while we were there, but it was part of the paperwork from the home care nurse. CHOP sent out the visiting nurse on Wednesday morning. She was here for a couple hours going over the pump and all the paperwork. We decided to wait until Friday night to try to put the tube back in. It took him a while to calm down... he was so irritated by it. We were really nervous about having him hooked up to the pump for so long overnight. He's still in our room, but he graduated from the bassinet to a pack n play- he is all over the place in it and we were afraid he would be wrapped around the lines. He adjusted to the tube again pretty well, so we decided to leave it in during the day as long as he is tolerating it. He pulled it out for the first time yesterday afternoon. He has been doing pretty well with his bottles throughout the day- we have been putting 4 oz in the pump overnight. Four ounces is the most we can put in the pump at one time, so it works out well that we only have to wake up once during the night. If he needed more than that we would have to get up 2 more times to add milk and disconnect him. He is now taking a total of about 22 oz by bottle per day. He shouldn't have a hard time putting on weight now that he's taking more and doing it in half the time he was before. He's starting to like "solids" more and more too- he eats oatmeal with fortified breastmilk and fruit every day too. We don't have any appointments this week, so I'm anxious to see what her weighs by next week.
This is the first week in a while without atleast one appointment between the 2 of them. Ryan had her ultrasound and bloodwork last week, and next week she has a follow up appointment with genetics and oncology. We will find out then if they think he needs to follow the protocol for Beckwith Wiedemann also... he had a few markers early on that have since gone away, and they usually recommend siblings with any markers to follow the regular protocol as a precaution. Ryan had the nurses cracking up at her ultrasound- she laid down on the table and said "Ok, I'll try to be brave". I don't know where she comes up with some of this stuff!

2010-01-19T21:53:00.002-05:00

Wyatt had his first PHP clinic appointment today. We were able to reschedule most of the appointments we had to cancel 2 weeks ago. He is finally feeling better, and gained a few ounces this week- but the decision was made to put him back on the NG tube to help him catch up. Being sick the last few weeks didn't help the fact that he was already falling off his growth curve, now he is completely off the curve. He is finally over 13 lbs though- he hovered around 12 lbs for a couple months. They will send a nurse out to the house to deliver a pump and show us how to use it for overnight feedings. The new plan for the NG tube is to keep track of everything he will take by bottle in 20 minutes, every 4 hours during the day. At the end of the day- we will take the amount he drank and subtract that from his daily goal (now 26 oz, not 24 oz). We will put the rest on a continuous drip overnight through a pump. He has to work really hard to drink his bottles. He has been getting in the 24 oz goal they set for him before- the problem is it would sometimes take him an hour or more to take a bottle and at that point he is burning more calories than he is taking in. Hopefully he will catch up pretty quickly and we will only have to use the NG tube for a few more months. It should make our lives a lot easier though- we have been driving ourselves crazy trying to feed him.
He also had a chest x-ray, ECHO cardiogram, EKG and bloodwork- most of the initial reports were in by the time we left tonight. We will get the final reports tomorrow or Thursday, but they said everything looked good so far. Poor guy spent the whole day at the hospital today- and is due for his synagis shot tomorrow morning. I'll try to post a 6 month photo tomorrow too!

2010-01-04T23:06:00.004-05:00

Pink eye and bronchiolitis have hit the house... Ryan, Wyatt and I are all sick! It hasn't caught up with Jason yet, but I'm sure it won't be long. Wyatt was scheduled for his first PHP clinic appointment Tuesday. He started with a fever Monday afternoon, so I had to cancel all of his appointments. It looks like we'll reschedule most of the appointments for the 19th, but we can't get in to see the pulmonologist until March. He was scheduled for a sedated pulmonary function test, which they won't perform while he's sick. He has been really good with his bottles this week- although the scale would probably say otherwise because he has been throwing up much more the last 2 days. It's probably better he didn't get weighed this week. The next month or so are booked with appointments for the two of them- hopefully the rest will go a little better.

2009-12-30T10:39:00.007-05:00

Wyatt is 5 months old! The monthly "chair" photo- Dec. 20th

Christmas Eve

Ryan is so excited Santa remembered her "lapstick"- that's all she asked for. She got an assortment of flavored chapstick that she insists on re-applying every 5 minutes... all over her face. She smells like a giant watermellon.

Such a happy guy!

Merry Christmas!

2009-12-21T17:59:00.006-05:00

I hope everyone had a great holiday! Just wanted to post a few pictures from before Christmas. I loaded these last week, but haven't had a chance to do anything with all the Christmas pictures yet. Ryan loved the snow storm the weekend before Christmas. She was so excited to get outside- she forgot to get dressed!

2009-12-17T21:36:00.004-05:00

Wyatt's first time with Santa!

It's been a very busy couple of weeks! I have been working full time the last two weeks, in addition to working for Fred Beans again this year doing portraits with Santa. We are really anxious for Christmas in our house- Ryan is starting to get pretty excited, but we could all use some down time too!
Wyatt is still hanging in there without his feeding tube. We went to the doctor last Wednesday- he gained 6 oz... we were SO relieved. I may have had a breakdown right there in the office if he had lost weight again! We've been working really hard to get him the volume he needs throughout the day. He is still a very hard baby to feed. He'll have a good day every once in a while, but most days are a struggle. He's still not interested in solids either. I tried applesauce last week- it went over about as well as the cereal... maybe worse. I'll try sweet potatoes next.
His next appointment is on Monday- he gets another synergist shot and a weight check. We'll see how he does. We have our first PHP clinic appointment on the 5th of January. He'll get another hearing test and we will meet with the cardiologist, pulmonologist, surgeons, nutritionist and will be sedated for a pulmonary function test. I'm sure I'll have plenty of pictures in the next week or so!

2009-12-03T19:33:00.002-05:00

Hope everyone had a happy Thanksgiving! We've had a pretty good week... tube free! We don't know how long this will last, but we were given the ok to try a week or so without the tube to see how he would do taking his bottles by mouth. Doing this also involved eliminating another overnight feeding- we are finally able to sleep through the night:) He has pretty much been sleeping through the night since we brought him home from the NICU. One good thing about being in the NICU- the nurses got his days and nights straight before he left. We decided to try to go without the tube on his 4 month "birthday". We had to replace it 2 nights in a row and decided to email the nutritionist at the surgeon's office to see what she would think about leaving it out for the day/night. She thought it was worthwhile to give it a week to see if he would eventually take more and more by mouth. He has been able to finish most bottles throughout the day- he has a really hard time with the last bottle of the night. He usually falls asleep after his bottle at 7:00pm and we have to wake him for another one at around 10:30. That will be the next bottle we eliminate once we think he can handle another increase. He is not throwing up his bottles the way he was with the tube either- the tube seemed to gag him even more once he got started.
We also tried oatmeal cereal for the first time on Thanksgiving day. It was pretty uneventful- he wasn't really interested in it, and hasn't wanted anything to do with it the few times I've tried since. We'll keep trying. He has his 4 month check up on Wednesday. The decision will be made then if he can continue to go without the tube or if he hasn't gained enough weight, we'll have to put it back in. Hopefully they will be happy with his weight gain- it will be especially hard to put it in after almost 2 weeks without it. He seems so much happier without it!
... So, I started this post last week and I am just getting around to finishing it tonight. In the meantime- Wyatt did have his 4 month appointment this afternoon. We were all bummed to find out that he hadn't gained any weight on the last two weeks... he actually lost a couple ounces. I called the nutritionist- we are going to try one more week with another change to the fortification of his bottles. He is still getting all breastmilk, we are just adding fomula to the milk to add extra calories. We all feel that he is SO close to getting the calories he needs to gain weight without having to use the feeding tube. We thought for sure he had gained weight this week... hopefully next week will be better!

2009-11-19T18:00:00.002-05:00

Just a quick update with a couple of cute pictures from the last few days. Wyatt loves interacting with his big sister! He thinks everything is so funny these days! We had a busy day yesterday... Wyatt had his 1st synergist shot. It was a bit of an adventure- I didn't expect a long visit, so Ryan came with us. I hate bringing her into the waiting room- she wants to touch everything. I wanted to bathe her in Purell when we left! She timed it perfectly and had a poopy diaper as soon as we got there- the poor nurse undressed him for his weight check as I disgusted her with Ryan's diaper change! He did really well with the shot though. They had us wait around for a bit after the shot to make sure he didn't have a reaction so the appointment ran a lot later than I expected. I had 45 minutes to get to work after we left the office... I just started back to work a few days a week. I had to pump, get his bottles ready for the day and get myself ready for work. A friend of ours was nice enough to watch them for an hour or two while Jason was at work. Lukily she's had 4 kids of her own and didn't mind the fact that he puked all over her and somehow managed to throw up his tube in the process! Twenty minutes after I got to work I was coming back home to figure out what to do. I didn't even know that could happen! It was still attached to his face, in his nose- the other end was just out of his mouth at the same time. I should have taken a picture. I guess he liked the break from the tube all day yesterday- he decided to pull it out this morning too.

2009-11-14T08:26:00.010-05:00

Pre-haircut photo~ he got his 2nd haircut last week

He loves bath time!

I love the way he's looking at Ryan in this photo

She pulled her stool up to his swing to read him a story~ I don't know if she noticed he was sound asleep

Ryan thought he could use a few toys in his swing

Wyatt had his last follow up appointment with his surgeon, Dr Adzick on Monday. We were going to schedule one more- but he has so many other appointments coming up, Dr Adzick didn't think it was necessary to see him again. He will start the PHP clinic in the beginning of January- he will have most of the same tests he had to have before we were released from the NICU. The earlier tests will be compared to the those they will take in January to see if there are any changes. He is now 12 lbs, 1 oz... still riding on the line for the 10th percentile for weight and length. His liver and gallbladder function tests came back normal so we were able to take him off 2 more medications- he is now only on 1 prescription med for reflux and a normal vitamin for breastfed babies. We also returned the baby scale to the NICU- he has an appointment every 2 weeks until the middle of January, so weekly weight checks called into the pediatrician are no longer necessary. A good day overall- another good follow up and we were able to cut $125 a month in medical expenses that insurance didn't cover. We are so fortunate to have such a good health insurance plan. The bills are still coming in, but they've got to be pushing 1 million dollars. I finally turned on the electronic delivery... they were filling the mailbox. We have pretty high copays, but insurance has paid for the majority of it.

We made another change to his feedings. We decided to cut one of the feedings in the middle of the night. He has been sleeping through the night for a long time now but Jason and I are still getting up twice to hang his feedings. His feedings in the morning are always the hardest for him too- we thought he would do a little better if he was a little hungrier. It seems to be working out fine- he's a little better in the morning, although he almost always throws up the first or second feeding. He is also handling the increase in the other 7 feedings per day to make up for the missed one. He still has good days and bad days- one day he will take most of his bottles by mouth, the next day he pushes his bottles away and we have to syringe a good amount of his milk through the tube. In other words- the tube is here to stay for a while longer. We were given the ok to try to start a little cereal in a few weeks. The nutritionist thought he was ready, she just cautioned us to keep it fun for him. We'll see what he thinks.

2009-11-01T09:43:00.008-05:00

Happy Halloween! We had a great time trick or treating around the cul-de-sac with Ryan- even in the rain. We had Wyatt all dressed up and ready to go out, but he ended up handing out candy with Daddy instead.

2009-10-23T22:29:00.000-04:00

Wyatt is doing well- still slowly gaining weight and struggling a bit with his feedings. He is finally 11 pounds though! We just changed his reflux meds, so hopefully that will make a difference with his vomiting and his bottle feeding. I have never done so much laundry in my life! He was just scheduled for his first synagis shot- they will start giving him the monthly shot in November. This is a series of 4-5 shots to help protect him from RSV this winter. We have another appointment with the surgeon the first week in November, we'll see what they think about his progress. We have gotten used to the idea that the feeding tube is going to be around for a long time. We just have to keep reminding ourselves that if having a feeding tube is the worst of his problems at the moment, we're in good shape.
Ryan had an ultrasound and bloodwork appointment at CHOP this morning. She did great-she kept the ultrasound tech entertained the whole time. We decided to go over to the Please Touch Museum for the afternoon after her appointment. Ryan had a great time with her cousins- Cat and Luca met us there. No pics from today- I actually forgot my camera. Getting out of the house is a little harder these days- especially when you are trying to make an 8:30 am appointment in the city.

Wyatt looks like such a little old man in his cardigan, a hand-me-down from Ryan, made by "big Grandmom" or "other Grandmom", as Ryan calls my Grandmom... confusing why she would have 2 Grandmoms (my mom is Grandmom too)! He had his first date with his little buddy Ava a couple weeks ago. We met the Wickemeyers at a pumpkin patch in Lansdale. We became friends with them during our stay at CHOP- it was hard not too, we couldn't get away from them :) Wyatt and Ava were born within a few hours of each other and shared the same room in the NICU- beds 30 and 31. Jaime and I were also right next door to each other in the SDU upstairs and when it came time for us to be discharged we were both on the list for the Ronald McDonald House. We ended up getting the last two rooms at the house -right across the hall from each other, but the weirdest thing- room #30 and 31! We had the same room numbers at the RMD House as our kids in the NICU. It was nice to see them outside the hospital- we had a great time.

Trying on his new winter gear

Ryan lining up all her babies- Wyatt in the middle of "Kevin" and "other baby"

"let's see if we can find Caillou on this tv"

Like father like son- watching the game

He got a haircut right after this was taken- he had a big tuft of hair on top and not a whole lot more

Poor Nash- another kid to bother him

Wyatt is 3 months old! The monthly chair photo.

2009-10-08T16:16:00.009-04:00

Mostly just a bunch of new photos... not a lot has changed in the last couple weeks. Wyatt is starting to interact with us more and more every day. He loves to smile while he's eating- causing the milk to just run down his chin... any excuse not to eat! He's still not interested in his bottles most of the time- choosing a good nap over a bottle anytime.
He had a pretty good follow up appointment with the surgeon recently. He continues to slowly gain weight and they were happy with his progress. There were some changes made to the way we were fortifying his milk- he is now getting more milk with every feed, but it is less fortified with lipids and formula than it was. He did awful with the changes at first, throwing up most of his bottles for a couple days. We called the surgeon and made an adjustment to his reflux medication and he seemed to tolerate it a little better. Looks like this is how it's going to be for a while- a constant balance of meds and feeding changes to keep his belly happy.

~ Some new photos from the last week or so

Ryan loves playing dress up, or dress down most of the time.

Bath time!

Jason wants to give him a mohawk

Happy as can be despite vomiting all over himself!

Wyatt is 2 months Old!

2009-09-22T08:17:00.000-04:00

Apple picking at Solebury Orchards on Sunday

NICU Graduate~ a gift from the Rokitas

Wyatt had his 2 month appointment yesterday. He now weighs 9 lbs, 7 oz and is over 22 inches long. The pediatrician spent time listening to his lungs without congestion, getting used to what he sounds like for any problems in the future. I asked him if he sounds "normal" - he said he would have thought Wyatt had pneumonia if he didn't know his history. He does have a few hernias- an umbilical hernia to match his sister's, and one above and below his incision. We have a follow up appointment with Dr Adzick on Monday, so we'll see what he thinks. They usually give an umbilical hernia 5 years to close before doing a repair. Ryan's will probably have to be repaired in a few years... maybe we'll get a 2 for 1.

2009-09-19T14:00:00.003-04:00

Wyatt is finally over 9 pounds! I put a call into Dr Adzick's office yesterday- Wyatt was really fussy and had not gone to the bathroom in over 36 hours which is not like him. I was worried about a possible blockage or something. I also mentioned that he was still not over his cold so they wanted us to make another emergency appointment at the pediatrician to have them listen to his lungs. Dr Nicholas wasn't too worried- his chest was totally clear and he gained another 5 ounces since Tuesday night, even without his NG tube that he ripped out again right before we left. At 9 lbs, 5 oz he has finally exceeded Ryan's birth weight at almost 9 weeks old! We have his 2 month well visit Monday afternoon- we'll see what they have to say.

A few new photos

2009-09-14T14:13:00.008-04:00

I was finally able to add a few recent photos without trouble-

Hanging out with his tube out... he rips it out atleast once a week.

He loves watching the little birds go around- trying to reach for one.

2009-09-07T21:25:00.006-04:00

I have been trying to post an update for over a week now and have not been able to add pictures, which I know is the most important part to everyone... We had a great holiday weekend with family. Wyatt had one of his first outings- we took them to the Polish festival at the Shrine last Sunday. Aunt Alison and Uncle Dan were in town for the holiday and a little wedding planning, so they were able to come with us too. We met up with Aunt Leigh, Uncle Damon and Dylan today at my mom's house for a BBQ on Monday. My grandparents are back in the area after 20 years so Wyatt was able to see his Great-Grandmom and meet his Great-Grandpop for the first time too.

We had our first scare this past weekend with Wyatt. The whole house is sick with a bad cold, Ryan and Wyatt with an especially bad cough also. We made an emergency appointment at the pediatrician Saturday morning, hoping they wouldn't send us back to the NICU. His advice was to keep a close eye on his breathing, watching for any "tugging" in his chest. If he does show signs of any distress, or if he develops any fever at all we have to go back to CHOP right away for a chest x-ray.

Now that a few weeks have passed, we have been able to sit back and realize all that we have been through. We just wanted to thank everyone for their love and support over the months. We would not be here without the help of so many people. It was very comforting to us to be able to sit down at night in the NICU and read the messages from everyone... even those of you who didn't want to post on the site. It's overwhelming to know how many people were genuinely concerned and were following our progress through the blog or word of mouth around town. We can't wait for you all to meet Wyatt someday... we'll be more social in the spring, after flu season :)

2009-08-30T09:34:00.004-04:00

Wyatt is doing great at home- it's hard to believe we have been home for over 2 weeks now. We had a follow up appointment with the surgeon, Dr. Adzick, on Thursday. Wyatt is slowly gaining weight and they are pleased with his progress over the last 2weeks. We will have at least one more follow up with him before we start appointments through the PHP clinic. The PHP clinic is a long-term follow up program at CHOP, following babies with CDH and other conditions causing pulmonary hypoplasia(underdeveloped lungs). We will be able to visit with all the specialists in one visit, rather than making a bunch of appointments. His first appointment should be around 6 months old. Dr Adzick made a comment that Wyatt will be one of the healthiest babies in the program... once again letting us know how lucky we are. Other than that- his incision has healed really well, his bilirubin levels are still high but coming down well and his reflux seems to be under control. He has been keeping much more of his feedings down than he was last week.
Ryan still can't get over her little brother... I thought the novelty would have worn off by now and she would wonder when he was going back to the hospital! She loves helping with him- she is always reminding us to change him and constantly tells me it's time to pump. She sticks his "fire engine" back in his mouth when he looses it- we have no idea where she came up with that name for his pacifier. We'll see how she feels about him once he is able to get into her toys... she is already telling him about her stuff- "can't touch it".

2009-08-21T10:21:00.007-04:00

Needless to say this has been a busy week! Wyatt is doing really well at home, he is eating a good amount of his bottles by mouth during the day. He does great when he is awake- the problem is he would rather sleep than eat at this point. The only good part about this is- he sleeps through the night while I hang his 3am feeding. He is a great baby, very content for the most part. He really only cries when he needs his diaper changed, you are messing with his NG tube and occasionally when he is hungry.
Wyatt met our pediatrician on Monday night. He had a good appointment overall and had gained a couple ounces since leaving the hospital. We rented a scale from the NICU so I will be able to call in his weight checks every week, trying to avoid the germs in the waiting room. The pediatrician went over the fact that we have to be very careful for the next 6 months or so with Wyatt. There is a good chance that even a pretty mild cold will send us back to the hospital and he will have to be put back on oxygen. We will probably be spending a lot of time at home this winter! They have already started the process of getting the RSV vaccine for him beginning in October or November. He will get one shot every month until April. They have to start arguing with the insurance company now to get it covered- most kids are not eligible for the vaccine and it is very expensive. So... nothing personal, but please stay away if you are not feeling well. We love the nurses and docs at CHOP but we really don't want to go back there with him.
Ryan has been a great big sister. She won't let him out of her sight, she wants him to be wherever she is. It was a rough first week at night- she had a really hard time sleeping. Jason spent a few nights in her rocking chair or camped out on the floor with her to settle her down. Who would have thought it would be the 2 year old keeping us up and night and not the newborn!
Wyatt pulled out his NG tube tonight for the first time since we have been home. We are still fighting over who is going to put it back in... it has to be done before we go to bed tonight. Let's hope it's as easy as it was in the hospital- there's no nurse watching over our shoulder this time!

We are home!!!

2009-08-13T20:25:00.006-04:00

Sorry for the delay... we have been a little busy this weekend- I started this post 3days ago! We were discharged Friday night around 5:30- just in time for rush hour traffic on the way home. We got the final go ahead during rounds- not very much notice. We weren't sure they were still going to let us go... Wyatt had lost weight a few days this week and was dealing with an infected circumcision site- poor guy! All Wyatt's (and our) tests were completed and the medical supply/ home care company was set up just before we left. We had a crazy first night trying to figure out where everything was- we have supplies everywhere and trying to find them in the middle of the night makes things a little more difficult. Ryan is really excited about her baby Wyatt coming home... especially now that we are all home together and things are getting back to "normal". It's hard to believe we were away from home for almost a month- I can't decide whether it was the quickest or longest month of my life! It was definately nice to be back in our own bed last night- even if we spent very little time sleeping. She's had a hard time adjusting to us being home- she won't let us out of her sight, she's afraid we're going to leave again. I think it's finally all hitting her too- thank god neither one of them will remember this experience.

Just as I had said- Wyatt woke up in the middle of the MRI and they had to cut it a little short. We were afraid that they were going to reschedule and require sedation for the next one but they got what they needed. There were a few findings on the scan- nothing to be worried about according to the doctors. I think we are both at the point where we would rather not know about something than tell us about it and expect us not to worry about it. I scared the poor woman from genetics one of the first days we were there- she came by to check Wyatt out and ask a few questions. Given our situation with both our kids at this point- we get a little defensive when someone from genetics starts poking around. Once again we were told it was just standard procedure and nothing to worry about. As far as the MRI- we were told there is a fatty deposit on his pituitary gland... fatty deposits can build up anywhere in the body and we shouldn't be concerned. There was also a small hemorrhage noted- again nothing to be concerned with. His EKG and Echo came back completely normal- even better than expected for a CDH baby. Wyatt broke records- according to the nurses- it's amazing for a CDH baby to leave in less than a month.

We had the visiting nurse come out yesterday and we will have an appointment with our pediatrician in Doylestown on Monday. Dr Adzick will see him again in 2 weeks, and the PHP clinic will follow him as well. His PO feeds are already improving now that we are home- he finished his first bottle last night.

Another busy day!

2009-08-11T16:32:00.003-04:00

Good thing we bumped up our NG training to last night- I walked in this morning and Wyatt had his NG tube out within 5 minutes! I was kind of relieved to get it over with though- now I don't have to worry about pulling it out just to replace it in front of a nurse before we leave. Jason may still have to- we each have to do it at least once. Wyatt got his EKG and abdominal ultrasound out of the way last night- they were looking at potential problems with his gallbladder... his bilirubin levels are still high. Not a big deal- it sounds like something that resolve itself over time even if there is an issue. He has now passed both hearing tests- they came by this morning for the second part of the screening. As soon as they were finished with the hearing test I heard the cart rolling toward the room for the ECHO cardiogram. I am hoping to get some of the results this afternoon but I have a feeling it will have to wait until rounds in the morning. The nurse and I just got back from wheeling him upstairs for one of his last tests- the MRI. They decided to feed and immobilize him instead of sedating him... I'm not really sure what that means, I just hope it works. He has slept through every other test- this will be the one he wakes up for. We'll find out in about an hour.

Looks a little crazy but it obviously didn't bother him- he slept right through it!

2009-08-10T11:40:00.005-04:00

We must be getting closer to a discharge date... they are making arrangements for a bunch of tests to be done in the next few days. We are set up for our NG class on Wednesday afternoon- our skills would have been put to the test this morning if we had already taken the class, he pulled the tube right out during a sneeze. He had his first of two hearing tests this morning, CDH babies are apparently prone to hearing loss so they test them before discharge. In the next few days he will have a MRI of his brain, an ECHO cardiogram, circumcision, PH Probe to check the severity of his reflux and an EKG.
He has not been doing well with his PO feeds (by mouth)- he is still really sleepy most of the time and is not interested in staying awake to eat. They think he still needs time to get used to the whole concept... nothing good went into his mouth for the first 2 weeks of his life. It's real exercise for him to take a bottle or breastfeed and he's just not up to it yet so we have been hanging most of his feeds the last couple of days. This is totally expected for a CDH baby. If after all we have been through, this is his only set back- we'll deal with it. The NICU is a constant reminder of how bad things could have gone for him and we are SO lucky with his progress.

"Ryan's turn"- she wanted to use the pump

Ryan finally got a closer look at her little "sister" as she calls him

Wide awake after this morning's bath

Sleeping through the hearing test

A good look at his incision- it looks great

2009-08-07T20:55:00.003-04:00

Wyatt is a free man! The PICC line was removed this afternoon- leaving him with just the NG tube... which is not attached to anything unless he is being fed. We can now dress him in just about anything- he was not able to wear one of his sleeves, it had to be tucked into the top until the line came out of his arm.
He had 2 of his best bottles today, this morning he took 25ML and this afternoon he took 40ML by mouth. We are making progress!

Wyatt's new baby blanket- Louise has been working on it, trying to get it done while he is still here to use it. Yes- I am still working on mine too... I haven't had quite as much time to do it here as I had thought. Days (weeks) go by so fast while you are here! I pump, wash the pump parts, feed the baby, hold the baby for the hour it takes to get the feed down and by the time he's done- repeat. Maybe I'll have it done for his first birthday!

2009-08-06T21:16:00.002-04:00

Wyatt has been slowly improving with his feeding... he is now up to 50ML every 3 hours and seems to be tolerating it pretty well. We have been trying to do 2 feeds by mouth every day- most of the time he shows very little interest. This afternoon was his best attempt yet, he took almost 20ML by mouth. We are definitely working on his terms- he decides whether or not he feels like waking up to eat or not... if he's sleepy, there's no chance of him cooperating. We have tried twice to have the speech therapist sit in on his feedings and observe his breathing while eating- both times she stood over him and watched him sleep. CDH babies have a really hard time getting the whole suck, swallow and breathe thing down and they end up having to work really hard to eat. He has to take long breaks between short intervals of eating to try to catch his breath. Two more pumps left the room today- he is taking in enough breastmilk now to get rid of the TPN (the fluids he has been given since birth). Hopefully he will continue to do well without it and in a few days they will remove the central line as well- that will leave him with just the NG tube!

2009-08-04T12:18:00.003-04:00

Wyatt is breathing on his own! Another tube and piece of equipment left the room yesterday morning... it's starting to look pretty empty around his bed! He's had a few good nights and seems much calmer today. I didn't have a chance to post anything last night- I went home to spend some time with Ryan.

The speach therapist came down yesterday to help with some of his feedings by mouth. He's starting to get the hang of things a little bit more with every feeding. He is up to 40ML/feeding, every 3 hours- whatever he does not take by mouth goes into the NG tube. We'll see what tomorrow brings.

2009-08-03T12:05:00.003-04:00

Wyatt seems to have settled down a bit over the last 24 hours, although he did need another morphine rescue this morning. He is doing great as far as respiratory issues are concerned... he is off the high flow cannula and has stepped down to a regular nasal cannula now- even though he doesn't seem to need that either. His cannula falls out all the time and he still stats at 100%. He is at a very low setting, so most likely they will wean him off tomorrow.
He's feeding is going a bit slower... he seems to have pretty severe reflux, so they are not increasing his feeds as much as they were. We tried to bottle feed yesterday without much success- he just needs more time. He can't fly through all of this without a few bumps... better feeding issues than any major complications with his lungs as we expected.

His first ride in a swing- trying to calm him down last night... he fought it for a while, but finally fell asleep.

2009-08-02T09:55:00.005-04:00

Wyatt's had a bit of a rough few days... he seems to be having symptoms of withdrawl from the fentenyl he was on until a couple days ago. He's been really irritable and sneezing quite a bit. They had the IV team come down yesterday to get a line and were able to give him two morphine rescues before the IV had to be removed. Atleast he was able to get a little rest in the meantime... he was exhausted yesterday, but just couldn't settle down. Hopefully we can ride it out today- he and Jason are taking a little morning nap now.
He is now up to 20ML of breastmilk through his feeding tube every 3 hours. He has been doing well with most of them, spitting up occasionally. The plan is to try to bottle feed today for the first time... we'll see if they push it back when they find out that the 9am feed only stayed down for a few minutes.

I gave him a bath the other night and was able to put him in one of his own outfits for the first time- the same outfit Ryan came home from the hospital in.

Smiling with Daddy

Wyatt is extubated!!!

2009-07-31T13:58:00.009-04:00

There is a cute little face under all those tubes and tape... we all knew it, it's just nice to finally see it! He was finally taken off the ventilator this morning and is now on a high flow nasal cannula. We finally got to hear his little voice... he has a tiny little cry for now, soon we'll wish he was that quiet! Now that the tube is gone and he has been on Zantac for a few days we are hoping that his feeding will go a little smoother- they may try a bit of milk in his feeding tube again later. He's napping right now (on his belly for the first time), but we will probably dress him in one of his own outfits this afternoon.

Blowing a big bubble soon after they extubated

Ryan went home early this afternoon after spending the night with us at the Ronald McDonald House. We really needed some time away from the hospital and Ryan needed some Mommy/Daddy time. We spent the afternoon at the Please Touch Museum with her... she had a great time!

This picture cracks me up every time!

"I'm pumping too Mommy" ~ using the Hooter Hider as a cape

Both of our kids were CHOP patients today- Ryan had her scheduled ultrasound and bloodwork appointments today upstairs. Lets hope that's the last time they are both in here together!

Clothes!

2009-07-29T17:14:00.004-04:00

Wyatt finally got his first pair of pajamas today. He looks so cute in his little CHOP gown. Once he is extubated he will be able to wear his own clothes- he handled his weaning from the ventilator well today, so this could be as early as Friday morning.
They made an attempt to feed him this morning... he spit it up pretty quickly though. He is really beginning to hate the tube down his throat (who wouldn't), and the thought is that once that is removed the feeding may go better. It's really common for CDH babies to have issues with acid reflux so this is probably contributing to his gagging. They started him on Zantac this afternoon- hopefully that will do the trick.

2009-07-28T10:09:00.004-04:00

New signs for Wyatt's room~ made by big sister Ryan, Luca, Cat & Aunt Kelly

Wyatt was wide awake when we walked in this morning... more than we have seen him all week. He also lost his "party hats" over night- as the one nurse referred to the IVs in his head. He has a bad reputation for being really hard to stick- they gave up on his next round of antibiotics this morning because they have no line for them. His belly looks great though so they didn't feel the need to keep poking at him.
They are going to get back to trying to wean him from the ventilator a little more today... a little slower than they had tried before hoping he will respond better this time. Hopefully by tomorrow he will also be ready to try to feed a little- he's still not quite ready today. We'll see what the day brings.

Channel 10 News Story- "Baby Wyatt"

2009-07-27T15:18:00.002-04:00

For those of you who missed the story that aired Friday night-
http://www.nbcphiladelphia.com/health/tips_info/Baby_Wyatt_Philadelphia.html

A great 1 week birthday gift for all of us!

2009-07-27T12:32:00.011-04:00

After one of the longest weeks in both our lives... we were finally asked if we would like to hold Wyatt this morning! He was really alert, looking all over the room, so I was a little nervous that transitioning him up may upset him. He has a reputation around here with the nurses- he does not like to be touched or messed with! He did really well though and we were each able to hold him for about an hour before he had to be transported upstairs for the PICC line to be inserted. The plan was to remove the line going into his head last night, but as we were leaving around midnight they were actually about to put a second line in. Hopefully one or both of them will come out later today now that they have the central line in. It sounds like they are going to let him just hang out for the rest of the day and not try weaning anything more for the time being.

2009-07-26T20:04:00.004-04:00

Not too many changes for today... he spent a good portion of the day awake, checking everything out. He's also starting to realize the tubes and his been trying to pull them out today... the nurse had to cover his hand with a little t-shirt to get him to stay still. He is set up to have a PICC (a central line) inserted tomorrow, so the IV in the top of his head will be coming out tonight. We'll be happy to see that removed- it's hard to look at a big IV sticking out of the top of his little head. He is going to have his first "bath" tonight after the line comes out so we can finally see what all that dark hair looks like when it's clean.

How we spend most of our day

New photos- I'm slacking already!

2009-07-25T20:15:00.010-04:00

It's been a busy two days -time to catch up with some photos...

Yesterday afternoon- finally awake after surgery... checking everything out

Trying to stretch out

Last night watching the news story- we took over the NICU waiting room

A new sign for Wyatt's room~ Thanks to Auntie Jaime & Cameron

Wyatt had another great day today. I went home last night to pack a new bag and spend a little time with Ryan. Wyatt was busy sunbathing when I came back to the hospital this afternoon- I would have a photo, but Jason left the camera at the RMD House last night (he won't do that again). Being under the lights isn't the only change in his progress... they are continuing to wean the ventilator- he's doing more and more breathing on his own. The plan is to have him weaned by Monday, but like they say with everything else- he will let us know when he's ready for that. They also tried taking the tube in his stomach out this morning... although he didn't tolerate that very well and it had to be put back in. They started him on antibiotics for an infection in his incision- it's already starting to look better tonight. The fellow on call was just in to check on him and thought it looked great. Hopefully our "rockstar superstar", as Dr. Adzick refers to him, will keep us all as pleasantly surprised with his progress in the next few days as he has in the first.

Wyatt- the NICU Superstar!

2009-07-24T12:24:00.002-04:00

I hesitate to let everyone know, without seeing it for myself first, but Wyatt's (our) story is going to air tonight on NBC 10 news at 5:00 pm! I'm curious to see what the pull from the hour or so of footage to air... hopefully just the good stuff.
Wyatt had another great night. He's still pretty sleepy from the meds used in surgery. He's just starting to wiggle his fingers and toes.
I'm waiting to get back to the NICU now- I ended up having to have the spinal patch done this morning and have been flat on my back since. Hopefully they will give me the ok to get up around 1:00. I'll post a few pictures then.

Out of surgery!

2009-07-23T15:05:00.004-04:00

Jason took a few photos of the hustle in Wyatt's NICU right before his surgery this afternoon. Unfortunately I wasn't feeling well prior to Wyatt's surgery and had to be brought back up to the delivery unit so I didn't get to see it for myself... the good part is that it was all filmed for Channel 10 news and I will be able to see it-possibly tomorrow.
Dr. Adzick just came up to my room to let us know that Wyatt is out of surgery and recovering now. The surgery went well- it was a primary repair, they were able to use his tissue rather than a gortex patch. There was more in the chest than we had expected, but it's all down in the abdomen now. The waiting game now begins... we just have to see how he handles everything. They are finishing up with him now and we should be able to get back into his room in the next few minutes to see him.
As far as the news report... Channel 10 had approached Dr. Adzick about doing a medical report on his approach to bringing the OR to the NICU. He called them yesterday to let them know that he had the perfect candidate for the story and wanted to invite them back to interview us and feature Wyatt's story. They filmed the OR/NICU before the surgery, Dr Adzick and Jason in the OR/NICU and the two of us in my room waiting. We'll see what they actually end up using! I've felt great the past few days- of course I get sick right before a camera crew shows up for an interview!!! ( I'm doing better now- complications from the spinal they gave me... they are pumping me with fluids now, I may have to have a patch tomorrow. No big deal though). I'll post more later. I'll also let you know when they are going to run the piece on Channel 10- possibly tomorrow night's news.

2009-07-23T00:34:00.000-04:00

Looks like we are still scheduled for surgery tomorrow... although we haven't been given much more information about the timing yet. They started the medication to "paralize" him and get him ready for surgery at midnight tonight, so they said he won't be able to move tomorrow morning when we go down to visit him. They will get the room ready at some point in the morning too- they will move all the equipment to one side and pull his bed out a little so the anesthesia team can get in behind his bed.

Ryan officially meeting her baby brother

Thank you to everyone for your calls and messages... we are trying to keep in touch, but it is really hard to return calls while we are here. There are no cell phones in the NICU and we are having a hard time getting a signal without leaving the hospital. Just know the thoughts are appreciated~ even if we don't get back to you!

Quick Surgery Update

2009-07-22T11:52:00.004-04:00

Dr. Adzick made his as usual, brief appearance with his team in the NICU this morning to say how great Wyatt was doing and "how 'bout tomorrow, probably the afternoon" referring to Wyatt's repair. People have been in and out of here all day so I'm sure we'll get more information later today. He also went as far as to say that he has given Wyatt an A+ so far, and the rest of the team agreed when he said he has never had an A+ student before (maybe an A- student before). Looks like we have another spunky kid on our hands... I think Wyatt is going to give Ryan a run for her money!

Another great day!

2009-07-21T22:41:00.006-04:00

We walked into the NICU this morning to see that one of his nurses placed Wyatt's name on his bed. He had a great first night and continued to stay stable all day today. There are rumors that he may even be ready for surgery by the end of the week! Dr Adzick ( Chief of Surgery & Wyatt's surgeon) stopped by this morning to say that he looks great, but these babies are tricky so you never know. Surgery is not going to solve all his problems- it is only another step in his recovery, he will still have a long road ahead of him. Once he does have the surgery his chances of having to go on ECMO are greatly reduced, so we are really excited about that possibility.

He was really alert this afternoon, opening his eyes for me for a while. I was able to change another one of his diapers this afternoon ( a big step for a CDH baby- you usually want to avoid any stimulation so the nurses will do most changes,etc.) They have been great about keeping us involoved in some of his care. Big sister Ryan is coming for a visit tomorrow, so I'm sure we'll have a bunch of new photos.

First NICU visit

2009-07-20T20:23:00.007-04:00

Proud Big Sister sitting with Mommy before they wheel me in for surgery

They wheeled him in to my recovery room for a quick visit on the way to the NICU

Settled in down in the NICU

I finally made my way downstairs at around 6:00 tonight to visit Wyatt. He's holding his own right now... pretty content unless his diaper is being changed or the nurse is flushing his lines. He straightens out and "cries" although you can't hear anything. They warn us that this could be the "honeymoon stage"- he's doing so well right now, but that could really change at any time. We're hoping he will stay true to his name's meaning and the "little warrior" in him will keep him stable from here on out. Jason just went down to check on him before we try to get a desperately needed good night's sleep. I'm sure I'll update again in the morning.

It's a Boy!

2009-07-20T11:54:00.003-04:00

Just a quick post to let everyone know that Wyatt Joseph was born at 9:19 am!
He seems to be doing really well- he even cried a bit when he came out. Dr Johnson has given him the name "chomper" for the nice bite he got on the way out also... he didn't want to let go of his finger! We were surprised to get a birth weight right away- 7lbs, 14oz! I was able to visit with him on the way down to the NICU- they stopped to let us have a few minutes. I'll try to post a few pictures later- Jason has the camera downstairs.

Yesterday's Appointment

2009-06-23T17:54:00.006-04:00

Everything went well at yesterday's appointment... the baby was moving and kicking like crazy again during most of the monitoring which made for a longer visit than expected. The baby fell asleep with the hands over the face and head- it really reminded me of Ryan and how she sleeps... maybe there is a girl in there after all! I was certain we were having a boy until yesterday, now for some reason I'm starting to second guess my certainty.
I finally asked to see the MRI images from our initial consultation- it was really crazy to see an image of my body with a baby floating around inside. The Dr. went over some of the initial findings again with me- she was really encouraged by the position of the liver... the baby's prognosis is much different when the liver is above the diaphragm as well as the organs. We are really fortunate to have the liver in a "normal" position.
Thanks again to Dan and Alison for thinking of us and setting up a page on firstgiving.com to benefit the Ronald McDonald House in "kidforte"s name. Thank you also to everyone who has been generous enough to donate money to such a great cause. They provide so much for so many families with sick children. We are very fortunate to have a resource like that available to us... let's just hope our stay there isn't too long!

Just about 4 weeks to go!

2009-06-19T12:15:00.000-04:00

We had another appointment at CHOP on Tuesday. Jason wasn't able to make it so Louise made the trip into the city with me. I now have 2 appointments a week where they do a biophysical profile / non-stress test to measure the baby's growth, check the amniotic fluid and watch for movements, breathing and contractions. Everything seems to be going great... the baby is over 4.5 lbs and growing well.

We also met with the social worker to discuss housing arrangements, etc. We have decided to reserve a spot at the Ronald McDonald House a few blocks a way. We hope this will help make things a little easier for all of us when we do have a few moments to get away. Our goal is to keep things as "normal" as possible for Ryan during our stay at CHOP... we are hoping to be able to take time as often as we can to spend with her. The NICU is open to all siblings, but the baby's condition at the time will really dictate how much visiting she will be able to do.

My c-section is now officially scheduled for Monday, July 20th~ if something doesn't happen sooner. Now that the baby is over 4.5 lbs he/she is a candidate for ECMO if necessary, so the thought of early labor isn't as scary as it had been. We don't want to add issues that go along with prematurity as well, so the closer we get to 38 weeks the better.

We also stopped by to see little Ruby Hope and her parents in the NICU. Ruby is now 11 weeks old and doing awesome. Although it would be nice to have someone else in the NICU who shares our story~ we are really hoping they are already on their way back to Texas by the time we get there! Please keep them in your thoughts too.

About Us

2009-06-13T20:15:00.004-04:00

Hi Everyone,

Jason and I have decided to start this blog to keep everyone informed about "baby" Forte. We are now 33 weeks- only about 5 weeks to go until the delivery date! For those of you aren't as familiar with CDH- I have gone over some of the information we have been given. While every baby with CDH is different- these are some of the things we can expect:

The baby has what is called Congenital Diaphragmatic Hernia (CDH). It basically means that there's a hole in the diaphragm muscle and the stomach and bowels have moved up into the chest cavity and are crowding out the lungs, preventing development (pulmonary hypoplasia). This occurs in about 1 out of every 2,500 live births and the cause is not known. Across the board, the survival rate is about 50%, but this varies greatly with each individual baby- depending on their amount of lung development at birth, timing and type of treatment given, presence of any other complications, and many other things. The baby is going to be born in critical condition in the new Special Delivery Unit of CHOP which was just featured on the front page of the Philadelphia Inquirer:(http://www.philly.com/philly/news/homepage/48013082.html
Without medical intervention he/she likely wouldn't live more than 20-30 minutes. We will not be able to hold the baby until he/she is stable which could be weeks. The same goes for baths, diaper changes and even touching. They will try to let me see the baby right after delivery and before he/she is intubated. He/she will be intubated and on a ventilator within minutes of birth so I may have to wait until I can get them to wheel me down to the NICU. There will be tubes put through the mouth and/or nose into the lungs and stomach to drain fluid, feed, and assist in breathing. Once the baby is stable enough to be moved Jason will go down into the NICU while I recover from surgery. Because the baby will have many tubes and wires connected to it, he/she will need to be sedated and most likely will stay sedated most of the time in the NICU. CDH babies need as little stimulation as possible. Sometimes just changing their diapers can cause them to crash.
The surgery to move the bowels and stomach back into the abdomen will hopefully happen within a few days of birth. However, they will not perform the surgery until he/she is stable enough to survive it. We do know that Dr. Adzick (Chief of Surgery) will be the one to perform the baby's surgery. The surgery will take place in the NICU so the baby will not have to be moved. Our main concern is Pulmonary Hypoplasia though, not the fact that the stomach and bowels are in the chest, and this will have to be addressed first. It's the lungs that we are really worried about. We won't know until birth as there are no prenatal tests for quality of lung tissue. Before the surgery the baby will only be fed through an IV because they want the stomach to remain as small as possible. After the surgery, the baby will be fed breast milk through a feeding tube as soon as he/she is able to eat. Children with CDH frequently have oral aversions, due to having so many tubes in their mouths and having food direct pumped into their stomachs. This is another reason why doctors have told us to prepare for a 2-3 month NICU stay.
The baby's Lung volume to Head circumference Ratio (LHR) is 1.3: anything below 1.0 is considered severe. The good news is that based on the LHR and prenatal tests, the doctors have put this baby in the best category ~ 90% chance of survival. We've been told that there is also a 20-25% chance of needing ECMO (heart lung machine for babies). We are really hoping to aviod this. ECMO is a last resort to give the heart and lungs a rest. It has ALOT of really scary side effects. We have a long road ahead of us and we just don't know what will happen. Having even a 1 in 10 chance of your baby dying is still very terrifying, but we are SO fortunate to have the best hospital in the world for this situation right here, and the doctors at CHOP continue to be very optimistic. We are doing everything we can to give this baby the best chance possible and we thank all of our friends and family for their support.
Keep in touch!

(Thanks to Ruby's Mom Holly for some of the well written information above)