Little Porker

Cole had his weight check this morning at the pediatrician and sure enough he weighed 8lbs 2oz.  Now we can go a two week stretch without having to go to any appointments!!  I can't even begin to tell you how nice that is!!!!  Cole's pediatrician was super thrilled with how well he is doing as are we. 

Overdue Update

Last Friday June, 24th Cole had a weight check at the pediatrician and he gained a whopping 11oz in 7 days!!  He is really getting chubby he is filling out in his arms and legs.  He weighed in at 7lbs 11oz.  Big boy!!  Owen didn't weigh 8 lbs until he was 2 months old.  Cole is just about 1 month old and he is i'm sure weighing 8 lbs or more.  We go for another weight check tomorrow morning so we shall see.  Cole is such a laid back baby.  He would sleep all day and night if I let him.   I have to set my alarm in the middle of the night to wake him up every 3 hours to eat otherwise he probably would have been sleeping through the night since he has been home.  He is starting to have more wake time as the days go by.  The doctor put him on zantac because I was sure he had reflux.  He has been so much more comfortable since he is on it.  He was also vomiting alot 2 weeks ago, so I tried to figure out what I was eating to see if he would stop throwing up and sure enough I am pretty sure it is dairy and anything chocolate.  So needless to say I have cut out all chocolate and most dairy out of my diet.  It is deffinately hard for me.  I'm a junk food junkie, but I certainly don't want a miserable vomiting baby so the junk had to go. 

I had my post partum visit today and my midwife said "everything looks great."  YAY!!!  I feel so good especially compared to my recovery with Owen.  I am back to my normal self. 

I took Cole today to get his 1 month pictures taken. I am such a cheapo I just got the free picture and I didn't buy any more.  The manager of the store asked if I would sign a consent so that they can hang Coles picture in their store.

Cole's newborn pictures

You can view all of Cole's newborn pictures here.

Relaxing

Outing

Cole at his first lansdale car show

GI Today...

...And no blood work! They said Cole is looking great and didn't see a need to draw any labs today. I think at our next cardiology appointment in July they'll draw them just to be on the safe side. His color is normal, his stools are normal, his liver is normal size,and he gained two more ounces since Tuesday! His doctors are feeling pretty optimistic about him having any liver issues. They won't say he is out of the woods quite yet but, they're looking up.

CHOP finally got their own in house genetics lab to do DNA testing for the Jagged1 mutation {the alagille marker} and are able to get their results back way quicker than they could a year or two ago. With that being said Cole's genetic testing came back and he is positive for Alagilles Syndrome. Which we knew he had it's just confirmation. His Xray he got of his spine showed he didn't have the Butterfly vertebrae which is another marker for AGS. Doesn't really mean anything at all it's just something they look for. Plus the cost of the Xray... Cha-ching.

Cole will be getting weight checkups every week at the pediatrician just to make sure he's getting nice and fat for his surgery.

Cole had his first cardiology appointment yesterday. His last with our favorite cardiologist for a few months. Boo... It went well. His SATS were normal and he is past his birth weight by an ounce! They couldn't get a blood pressure read anywhere on his little body. They tried every limb at least three times. I don't think she was putting it on tight enough, which must be why they wrap it so tight in the CICU. The nurse remembered us from being in there with the "yellow baby."
We weren't really sure what our cardiologist was doing taking a three month leave but, she did tell us and told us that she will most likely be dropping by during the surgery and to email her with his updates. She said she can't stay away that long from us and her other patients without peeping in from time to time. Which is good to know. We were pretty nervous about not having her around.  She picked up Cole and said, "OK, I'm taking him with me and leaving." She literally sat and held him for 10 or 15 minutes while we talked about whatever. How many doctors do that?
While she is out we are going to try to see a cardiologist that is in on Fridays so, we can coordinate our GI appointments on the same day.This is a good idea for obvious reasons...

We had back down to CHOP on Friday for our GI appointment and I'm sure Cole will need blood work drawn, hopefully nothing but good news from those folks.

Cole's First Bath!!!

  

    

 

Cole went to the pediatrician today and gained 2.75 ounces! That's what a baby without heart disease does if not a little less! Next they'll be telling us he's gaining too much... Cole has a clogged tear duct so every time he sleeps he wakes up with all kinds of gunk on his eye. What fun.

I'm going back to work on Monday, then I have off Tuesday and might be able to do a half day on Friday for appointments. We'll see what kind of work we have going on.

Ashley was able to get a good nap in today while me and Cole hung out downstairs and looked at bikes on the computer.  Yes, I have already started looking for a road bike for him. Road bikes for kids are hard to find...

9:31 PM

We got an interesting surprise today. One that we weren't expecting at all but, are very happy that we got it. Cole got his very own Vermont Teddy Bear from the same guy who bought Owen his bear!  We're going to have to move to a house with an extra bedroom just for the bears. We wondered what we were going to do for Cole's monthly pictures. Now we know. Thanks Tim!

The rest of Cole's umbilical cord came off today...The things that excite parents... Actually, it's a real good thing. It was really annoying putting diapers on with that thing in the way.

Cole in his coming home outfit.

 

 

 

Back to the pediatrician tomorrow for a weight check.

First Full Day Home

We went to our first pediatrician appointment this morning. The doctor has actually heard and read about Alagille's Syndrome. I thought... "Wow, really? Are you lying to us?" Everything went pretty well there. He did say that Cole's right eye hangs out a little farther than the left. I had noticed this before but, no one else said anything so I figured it was just my imagination. He said it could correct itself but, it's the last thing we need to be thinking about right now.{seriously. Just like that silly hearing test}

While taking Cole for a tour of the local market Wal-Mart, we got a few phone calls from schedulers at CHOP. Confirming his cardiology appointment on Tuesday, another for GI next Friday, Silly hearing test in August, and his HEART SURGERY FOR AUGUST 5TH. Pray for Cole and everybody that we will have a hand in his surgery on August 5th.

Ashley is trying to breast feed Cole more than the bottle before our next appointment on Friday to see if he loses/gains weight to see if getting a scale at home to see that he is eating as much as he needs to be eating. We want him to gain as much weight as possible before his surgery. I know if he doesn't gain quickly they'll want him on high calorie formula.

By the way...
Cole was the bottom picture and Owen was the top!

5:07 PM

Home sweet home. We finally got home around 3. Cole's been loving it as much as we do. They were still a little hesitant to send us home since he is not up to his birth weight yet. I don't remember Owen being anywhere near his birth weight when they sent us home. Isn't it a known fact that babies thrive better at home anyway? We do have to go to the pediatrician tomorrow and Friday plus, we'll have a cardiologist appointment next week and probably a GI appointment the week after that. We just have to make sure he is gaining weight and doesn't digress. He didn't pass his hearing test. The audiologist said it was probably because of electrical interference with the monitors and leads. She said to get him retested in 6-8 weeks. He can hear fine. We know this for a fact from less scientific methods. Glad to be home and thanks for the prayers.

Whose Who?

11:21pm

Well, we didn’t get home like we had hoped for, still here waiting… Waiting for what? Yeah, that’s what I said…

We got a phone call this morning from CHOP telling us that they added Cole to our insurance policy. She went over the deductables and that his surgery would be covered 100%. Ok, I hang up the phone and go, “Wait a minute. How the heck can they add him to our policy without us consenting? And we don’t want him on our policy!” ‘Ashley had to call the insurance company anyway because of a mix up with Cole’s pediatrician appointment; and so she asked them and she said they just called and told them when he was born. We won’t really know for sure until bills come in, since insurance companies can get away with lying to you.

Today, Cole got his eye test done. Well, it’s not really a test. They were looking into his eyes to see if they could see posterior embryo toxin. It’s just a fancy word for a circle thing that hangs out in the back of his eye. It’s just another flag for AGS and it was very apparent that he had it. Three different eye doctors saw it. He had some labs drawn while he was sleeping and slept right through it. He sleeps allot. We have to try to keep him awake when feeding him. We have to wake him up so he doesn’t sleep through his feedings. If he wakes up and he’s not hungry and we don’t feed him, he’ll sleep right on through. We’re hoping he does this at night…

All those other fun tests that were “scheduled” weren’t “scheduled” at all. Pretty sure it was the Residents fault. Who strangely never poked their head in to say, “Hi” even though one of their excuses for keeping us today was for them to get to “know” Cole. So tomorrow he is scheduled for his X-ray first thing in the morning and the hearing people better get their butts over to him right after that. They drew labs on Cole twice today and both of them were comprised samples. Meaning they screwed it up somehow. The poor kid has nowhere else to be poked and each time they have to literally squeeze the blood out of him. His labs have been fine since he’s been born, I’m not sure what they are so concerned about that will change in a day. We can always go and get them drawn out patient around us if they want them to be checked in a few days. But yeah, we said if you screw it up tomorrow morning… you’re done.

They wanted to give Cole Tylenol today to help with the pain of one of his vaccinations. Tylenol is a big, “NO” for liver patients. And since we don’t know how Cole’s liver is affected by the AGS yet, we’re both hesitant about giving it to him. Of course you’re met with, “When I get shots I take Tylenol cause it hurts” and “let me go see what the doctor says” attitudes. {I wonder why he doesn’t come in and say hi to us?}  Well, we didn’t give it to him and he was fine; it didn’t phase him one bit.

We did have one of our favorite nurses for a few hours today and our favorite male nurse came in and talked to us for a little while.

We’ll have an appointment with cardiology before the end of the month. We have a pediatrician appointment on Thursday and I’m sure we’ll need a GI appointment in a couple of weeks.

So anyway, tomorrow?

10:55 pm

Today turned out pretty good. We were awake and ready for the breakfast that volunteers prepared for us at the RMH. We usually never make it for any of the meals; the dinners because we are at the hospital and the breakfasts’ because they’re usually too early when you’re on a hospital schedule.

Cole had a pretty good day as well.  He’s been eating in the 50ml range consistently, which is becoming more breast milk than formula. He gained weight.  He had a friend come and visit him. He passed his car seat test. His parents learned not to shake him uncontrollably when he’s upset and they got to watch the government mandated twenty minute video on SIDS.

 Cole got transferred down to the CCU and had the same nurse that Owen had the first time he was in the CCU. We saw allot of people from our time here with Owen. It’s good to know that he wasn’t forgotten by them and they still remember us. They were having trouble getting a good read on his oxygen saturation level when they switched monitors. So we put a few different sensors in a few different spots and it was still dipping down a little bit but, not much. Probably to where Owens’ highest was. So they brought in all the oxygen stuff just in case but, never used it. Hopefully they won’t need to use it tonight.  The doctor came in and did a good listen on him and didn’t think there was anything wrong. She is another one that knows us and Owen well. She seems to be up to snuff on the liver side of what we could be dealing with. She said, “The first thing I asked when I heard the blood levels were back was; where is the bili-rubin counts at!?” When we were leaving the nurse seemed to get a good read on his foot for his oxygen. It had to have just been the sensor.  They’re always finicky.

Hopefully our next post will be from our house. Where we can fatten Cole up for his surgery!

3:15

15 more minutes and the car seat test will be over.

11:40

6/4/2011 11:05pm

It’s typical weekend in the hospital. Not a whole lot going on, a bunch of kids were discharged, so it’s pretty empty.

Cole continues to eat well and is becoming more alert. He was up for a good hour and a half today, totally content with hanging out. The results from his ultrasound came in and they couldn’t see the bile duct between the liver and the intestine. Maybe they just missed it? Maybe it’s too small for them to see? Maybe it’s not there and is hiding because of AGS? This was all coming from the fellow cardiologist who talked to GI and probably doesn’t even know what AGS is. Our GI doctor will stop by on Monday to talk it over with us and she might want more testing. Until then, we aren’t thinking much about it.

Cole was supposed to be transferred down today but, it didn’t happen.Maybe tomorrow.

Both nurses today were nothing to write home about… unless you were complaining to your parents about them and how they aren’t that good, or seem to care all that much. Thinking back, the nurses on the other side of the room were loud, rude, and offensive. I’d think it was a weekend thing but, I saw a few nurses working we had before.

On Saturday nights and all day Sunday you are not allowed to park at the Ronald Mcdonald House garage. It’s really hard to get a spot on the street around the building so, I decided to just leave the car and either take the shuttle back or catch a cab. Well, we found out something new tonight. If you miss the Ronald Mcdonald shuttle, CHOP security will take you there for free. Just don’t expect to leave all that quickly during a shift change…

Some interesting stats from The Ronald Mcdonald House website.

A dime here. A quarter there. It might not seem like much. But when millions give, the amount those coins help children and families worldwide is truly amazing.

The RMHC Donation Boxes are one of our biggest ongoing fundraisers. It’s from people like you filling the Donation Boxes with nickels, dimes and quarters. Last year alone, nearly $25 million was collected.

Just how powerful is the small change dropped into the Donation Box?

1. If every McDonald’s customer donated a penny in the Donation Box, it could raise over $116 million to support children in need and their families worldwide.
2. A full Donation Box could let a family stay together at a Ronald McDonald House for up to 1 night while their child receives care at a nearby hospital.
3. A full Donation Box could provide a child with a dental screening in a Ronald McDonald Care Mobile.
4. Change in the Donation Boxes can give families a place to rest in a Ronald McDonald Family Room, just steps from their child’s hospital bed.

Show your support when you see a Donation Box at a McDonald’s, and drop in your spare change. Spread the word and suggest to your friends and family that they do the same.

Ronald McDonald Houses are stocked with toys and all the essentials of home for the children and families staying there to enjoy and use.

Keeping Ronald McDonald Houses fully stocked depends on the help of the community though, and we want to make sure they have everything they need. Here are some items that Houses can generally use, but we encourage you to contact your local House program to get specific lists.

Toys

Because Ronald McDonald Houses serve so many children and families, we only accept new, non-handmade toys.

• Board games
• Stuffed animals and dolls
• Books for various reading levels
• Puzzles
• Video games (rated E)
• Movies (rated G)
• Balls and outdoor games

Food

We want to make it easy for families to have meals and snacks without worrying about grocery shopping.

• Canned goods
• Non-perishable food items

Shopping List

Houses need the same products as your home, but they need them in bulk because several families stay in a House every night.

• Paper products (facial tissue, toilet paper, paper towels)
• Trash bags
• Aluminum foil, plastic wrap and sandwich bags
• Laundry detergent and fabric softener
• Cleaning products (sponges, dishwashing liquid, dishwasher detergent)
• Bath and bedroom items (towels, shower curtains, sheets and pillow cases)
• Personal care products (deodorant, dental floss, toothpaste, soap, shampoo, conditioner)
• Entertainment products (games, movies, books, art supplies)
• Long-distance phone cards
• Gift cards for local grocery stores and gas stations
• Greeting cards and postage stamps
• Gift certificates to local grocery stores and department stores (Target, Wal-Mart, etc)
• Transportation vouchers (buses, taxis, trains)
• Passes to museums, cultural and sporting events

Contact the Chapter in your area to get a specific wishlist for your local House.

Cole had a much better day yesterday. He’s back to his old self again. They have him down to room air with a bit of a kick to make sure he remembers to breathe when he’s sleeping. All his blood levels are looking good. He had an awesome nurse yesterday that treated him like her own child. Nutrition was saying they’d have to put a feeding tube in if he didn’t start taking in 60 MLs per feeding by Sunday. Our nurse thought that was absolutely ridiculous [as did we] since he is only three days old. One of those days he was NPO, he just had a cath done, and they weren’t really feeding him on a regular basis since he was born. Today {Friday} was the first time he actually was fed every three hours or so and he was pounding em back like nobodies business.  The first time she fed him he wasn’t swallowing all that well so, she called  to have "Speech" come up and see what they thought about it. She thought getting them involved is way better than letting them put a feeding tube in. No feeding tube for Cole.

We were able to go and take our CPR class. You know how they changed CPR,  to CAB now instead of ABC? The reason they switched it is because people take a minute to think about doing mouth to mouth on a stranger. The scientifically proven method of remembering how fast to do your reps, is to sing “Stayin’ Alive” by the BeeGees in your head. The fun things you learn in a hospital.

Cole got his first bath by mommy, too. He loved most of it. Until he realized, “Hey, wait a minute. I’m supposed to get food when I’m awake!”

The GI team came in and took a look at Cole. They ordered up an abdominal ultrasound to see if they can see anything that might elude to AGS. He might have had it done after we left or he’ll get it sometime today. After that I think they are going to transfer him to the step down unit for the rest of his testing{hearing and eye sight} and then hopefully we can get home early next week.  Our cardiologist is in charge of the step down unit next week so, she will get us out of there quick. Both our cardiologist and GI doctor have been stopping by daily to see how we’re doing.  I don’t know how or if they do treat all their patients like us but, we are very blessed to have them in our lives.

Cole’s surgery was put into the scheduling books for 6-8 weeks from now.  We want to get it done sooner rather than later just in case any liver or kidney things show up.

10:28am

I'm awake and doing great!

Recap 6/2/2011

Well... he woke up! Not the way we wanted him to though. But before we talk about that let's talk about the results from the cath.
While Cole was in the cath lab; Ashley got discharged from the SDU and we went to get our room settled in at the Ronald Mcdonald House, got a quick bite to eat at Boston Market and headed back to see if Cole was out yet. He just got back to the CICU when we walked in. The cardiologist pulled us a side into a conference room to talk about the results. They were able to see the pulmonary arteries, how the blood was flowing, and the confluent arteries. The confluent arteries aren't mapped out the way they typically are in TET baby but, he said there is nothing wrong with the way they are. Besides the fact that the one is right over where they typically make the incision to repair the heart. Not a big deal just something that the surgeon needs to know about. Dr. Natarajan also reviewed his cath results and said that his heart looks better then they had originally thought!!  We will be scheduling the surgery before we are discharged to make sure we are in the surgeon that we wants schedule.{He's a very very busy man} Once Cole starts eating, gaining weight and GI gets the stuff they need. we should be discharged.  Unless tonights episode will push us back a little bit.

Ian was with Cole at his bedside and I had stepped away for a minute to use the bathroom.  While in the bathroom I heard the horrible alarm go off that said something along the lines of  "Emergency 6 south room 3."  When this alarm goes off all doctors around are to drop everything and run to the childs bedside.  I immediately thought to myself  "Is that Coles bed?!  Nooo!" so I just kept taking my good old time in the bathroom.  The alarm only went off for a very short time maybe 30 seconds.  So I knew whatever had happened to whatever child in the CICU they were okay otherwise they would leave the alarms on.   I went back to Cole's room to find many doctors standing around his bedside watching him and was greeted with the nurse telling me that Cole was not happy that I left his bedside.  So much that he decided he was going to hold his breath and his heart rate dropped.  They had to give him two puffs of forced oxygen to get him to breathe and his heart rate to come back up.  He was not happy by the time I got to the room.  He was breathing really hard and just trying to cry, but his poor throat was sore from the breathing tube they had in place for the heart cath.  His breathing was really heavy and he was retracting his chest a lot.  Just all together not right.  We kept watching him and trying to soothe him and every time he would get comfortable he would decide to hold his breath and his heart rate would drop pretty quickly, but we would stimulate him before he got to the point of setting all of his alarms off.  After, watching him for about a half hour or so continuing these episodes they decided to give him some tylenol, up his oxygen as a reminder for him to breathe & up his IV fluids.  He was then able to settle down and relax without his heart rate dropping and holding his breathe.  They think this is just him coming off of anesthesia and or the fact that he was in pain and was holding his breathe.  Poor thing.  They did an xray of his chest to make sure everything looked clear there and they also did bloodwork to make sure his oxygen levels looked good in his blood and all looked great.  Ian and I are/were quite frazzled.  Especially after, everything we went through with Owen.  It was certainly hard to leave our sweet Cole tonight at the hospital, but Cole is in the best hands of all.  GODS!!!

7:35...

Still waiting for him to wake up...

4:07

Cole is out of the Cath lab and back to his bedside. Everything looks fine and they got all their questions answered. We are waiting for him to wake up.

1:20

Cole just went back for his cath. They are going to get labs for all his genetic testing that needs to be done while he's under anesthesia, including ags.

11am

We are waiting for Cole to go back for his cath. He is the last one today and hopefully won't get bumped off for an emergency patient. The fellow said sometime after 1pm he will go back. Cole is very hungry and we are trying to keep him happy and sleeping.

6/1/2011

We haven't really updated on what is going on with Cole's heart because we haven't known what is going on with Cole's heart. Last night they did an ECHO and couldn't see a few things,then did another one this afternoon and still couldn't see what they wanted. They are trying to see where everything is getting blood flow from and if indeed his ductus has closed. They started him on Prostaglandens to see if that will open it{the ductus} back up. They'll be doing another ECHO at midnight tonight to see if it worked. In a few days they'll be doing a heart cath to get solid evidence as to what the time frame for surgery will be and what all will need to be done. We're hoping they can squeeze us in for the cath before the end of the week or else that'll mean two days of sitting around.

I saw Owen's GI doctor this morning and she said the GI team was supposed to round on Cole today to see what kind of tests they would like to do. Possibly ultrasounds on his kidneys and liver. They never showed up. I told the nurse to make sure someone gets them up here. I remember how hard it was getting them up to come up and evaluate Owen... Her long term plan as of now is just to wait and watch for tell tale signs of AGS.

Our cardiologist informed us that she will be on leave from July-September, which is a bummer for us and we will be glad when she is back. I'm sure we'll be in touch with her keeping her up to speed with what is going on. In the meantime we will be seeing a cardiologist that we have met a few times that our Dr. highly recommends.

 Ashley will be discharged tomorrow and hopefully we will have a room at the Ronald Mcdonald House. She's doing wonderful and can't wait for Cole to come home

We have to do CPR classes again. Which is great since they changed it all around since the last time we took them. And we get to watch I'm sure the highest of quality videos on SIDS and shake the salt not the baby.

I won!