SURGERY has been scheduled!

Robert's next open heart surgery is Wednesday, October 17th!  UAB called yesterday and said that it is on the books!

We will be in Birmingham on the 17th and then stay as long as it takes before discharge.  Surprisingly, if all goes well, Robert will not be in the hospital for very long.  It is amazing how fast these babies recover!

At this time, I think the surgery plan includes a partial repair and a conduit around the valve.  If you remember, the repair includes closing the VSD (hole between the bottom two chambers), removing the excess heart muscle on the bottom of the heart, and slightly moving the aorta.  Because of his coronary anomaly, they have discussed a conduit around the pulmonary valve instead of opening the valve to increase the size.  Of course, he went through this at 4 weeks old in July 2011 when we all thought he would have a complete repair...Instead, he came out with a BT Shunt and no repair.  So plans are just that...Plans!  We will see on the 17th...

Cardiology Update 09.24.12

My sweet boy went to the cardiologist today.  Robert had his normal monthly check-up with an Echo.  Here is a picture of Robert relaxing during the Echo.

[pics coming soon...]

Nothing really new it seems.  They measured the velocity of his blood flow and a few other things.  They all seem okay.  Or as okay as a child with a congenital heart defect can be I guess.

In May, we went to UAB for OHS #2.  They were going to attempt the full repair.  But in pre-op, the doctors were in disagreement if he was "ready", meaning if he was big enough.  They had originally said that he should be 9 kg (or approximately 20 pounds) before they attempted the repair.  Due to his coronary anomaly (where his coronary lies over his pulmonary valve), they wanted his heart to be the size of a large walnut - not a "small" walnut (???) - so they could make a more precise incision to increase the size of the pulmonary valve.  But the final decision at pre-op was to go to the heart cath lab and see what they could do there and also map out how his pulmonary arteries branch in his chest.  During the heart cath, they were able to balloon an area of the pulmonary valve to buy him some more time so he could get that heart large walnut sized.  They also found that his coronary artery doesn't branch like they originally thought and cutting through it would be a mistake. So afterwards, the doctor sent us home with the plan that OHS #2 would most likely occur in August as they predicted his weight would be close to 9 kg.

Fast forward to June, July, then August with no mention of surgery plans.  Robert was not reaching 9 kg (and even lost weight in June/July due to illness).  And at this week's cardiology appointment, Dr. B said she would be contacting UAB to let them know he was now 9.0 kg (exactly!).  Robert went to get his Echo and the Echo was emailed off to Dr. L in Birmingham.  Now it is just waiting to see what they say!

Back at home...G-Tube and all!

We are back! We were notified of discharge on Friday morning and then it was off to clean up and load the car so we could make it back to Mobile at a reasonable hour! I was able to actually sleep in a real bed on Friday night. It was more than I could ever hope for! I completely understand why a hospital can't be a 5 star hotel, but the running line seems to be that the extra "bed" for the parent/caregiver is notoriously awful...Why? Why can't they make it just a bit more comfortable? It's as hard on the caregiver to be in the hospital as it is on the patient. Oh well. There are more important things to think about anyway.

I did make it out of the hospital every day. I went "home" (i.e. the family friend's house...more to come on that in a minute) to shower each day and repack an overnight bag, plus to pick up break-lu-nner (that is the one meal that encompasses all three when you are staying in a hospital). I would pick up one decent meal from somewhere and bring it back for my mom and I to share in the hospital room. It doesn't sound all that great, but when you aren't doing much more than sitting in a small room, you don't really need that much sustenance.

We arrived home late last night (we = my mother, myself, and Bobby). Emerson was beyond excited to see us...which always makes you feel better. Love those longer than normal hugs. :) I think not long after, my dad went to pick up dinner and then my mom, Bobby, and myself fell asleep in the den. Somewhere after that, in a foggy daze, we hooked up the feeding pump and all went to bed. Sleep is important since you don't know what will ever happen next...might as well get it when you can.

Bobby always gives or brings Emerson a present when he is in the hospital. So just as any good brother would do, he brought home a present in the form of Disney's Repunzel from Tangled. Emerson loved it. And she gave Bobby a sweet kiss and thank you - unprompted I might add.

(At this stage, Emerson refuses to look at the camera/phone. Instead, she completely ignores any crazy thing you might be doing to get her to look at you. Oh well. This too shall pass.)

Today was a lazy day. By lazy I mean that we didn't go anywhere really, but it still wasn't quiet, relaxed, or even lazy. I did get to take Emerson out for a "cheese samich" at Camille's. And then we ran to Target for the essentials (i.e. Goldfish bread, bananas, blueberries, strawberries, grapes, and cheese). I also found a Disney Princess Ultimate Dream Castle for 70% off in the clearance section. Talk about a score! It will be going in the attic for a future birthday or next Christmas...whenever Emerson starts playing more with Disney princess dolls or Barbies. Then it was home to nap. Well, Emerson to nap. Bobby is still very much in pain so it's just a lot of holding and trying to make comfortable. I hope he improves soon. :(

I thought about this quite a bit while I was in Birmingham (multiple reasons...but it kind of goes along with my personal life problems). I thought of how I would ever thank the friends that offered a place for me...us to stay while trying to take care of Bobby's medical needs. There really is nothing I could do that would ever tell them how grateful I am for all of this. We have several very good friends that live in the Birmingham area that have offered the extra rooms in their home. And I truly appreciate it...And may be using it sooner than they think. But, in the meantime, we haven't had to exhaust others with our trips. So, I know I tell you, but just if you read it too, THANK YOU!

G-Tube & Hospital Stay

I know I should have posted this before now, but we are currently at Children's Hospital of Alabama (Birmingham) recovering from Bobby's g-tube surgery. After a series of events that occurred during my non-posting blog period, it became apparently clear that he needed the g-tube, but to get that, he needed a new doctor. I had two people with heart kids (both around 4 years old now) suggest Dr. Steven King (Alabama Pediatric Gastroenterology). And his name was actually mentioned in August by one of the cardiologists at UAB. So, I asked for and received a referral in November from our cardiologist and received an appointment for December 7th. Dr. King was awesome and knew exactly where we needed to go from where we were at the time. The holidays put a damper on any type of procedure so we waited until after the New Year to schedule the tests and G-Tube surgery. Apparently, the scheduling worked out very quickly in our favor and I received the call only a few days before we needed to be in Birmingham.

Look at that smile! He is ready for his tests...

Getting ready for the Barium Swallow...But then put on hold and told to wait in the waiting room while he continues to digest his stomach contents.

Awwww...Look at me! I am so handsome in yellow (even if it is a hospital gown)! ;)

What?!?!?!!! I am not handsome? Nooooo, I didn't think you said that either. I will show you some leg so you know who is the cutie patootie.

Uh-oh. Do not hold him down. Bobby not likey.

This is my attempt at taking a picture of us together. There are actually very very few of me and Bobby together as it is extremely hard to take a picture of yourself. And who else am I supposed to ask...Emerson?

Awww. Just another one for good measure. And I love the smirk he gives me.

On Friday, Bobby was to report to CHOA at 9:45am for the Barium Swallow (a procedure that primarily evaluates the esophagus) and a Lower GI Tract X-ray (an x-ray examination of the large intestine/colon). Both required Bobby to drink barium...The x-rays for the Barium Swallow was performed while he actually drank it (and by drink...I mean the nurse used a bulb syringe to shoot it into his mouth while he screamed and spit as much as possible back out)...The Lower GI was done a while later after time had moved it past his stomach (a lot less traumatic).

On Monday, surgery was tentatively scheduled for 7am (although we all knew it would be later as nothing ever starts on time). So, my mother and I loaded Bobby up and headed to the hospital at 5:15am. We sat in the surgery waiting room until 7am when we finally got called back. Weight, temperature, O2 sats, respiration all taken before we were put in our temporary room. Anesthesia and various nurses came by and took medical information while providing insight into the procedure and expected recovery.

Monday morning...And here is my sweet non-g-buttoned tummy one more time. Take a good look.

Soon after, I carried him down the hall to the operating room where we gave our kisses and said our "see ya later's" (remember: no goodbyes here!) until later. We were escorted back to the same waiting room where Emerson had arrived and was already riding in a red wagon.

Thankfully, CHOA is designed for kids (obviously) and it isn't terrible to sit in a surgery waiting room with a 2 year old (much different than UAB's Cardiac waiting room). All the TVs are turned to Nick Jr. and there is even a tree house in the middle of the room to climb all over. Oh - and how would I ever forget - the red wagons that litter the hallways. Thank goodness for the wagons. :) Emerson kept us all busy as usual. (My father arrived shortly before we went back to drop off Bobby for the operation.) So, between myself, my mother, and my father, we have a team handling her. And believe me...it takes a team...and lots of various toys and activities (which we brought too).

A long while later, Dr. King appeared and gave us the news that all had gone well. His stomach is apparently more midline than normal (??? - my thoughts exactly...). And the tests done on Friday were supposed to point that out (which they apparently did), but that was not noted on the report sent to him. Either way, it wasn't a big deal and the g-tube is just fine about 1.5 inches directly above his belly button.

Bobby received a MIC-KEY tube. Specifically, he received the Low-Profile Gastrostomy Feeding Tube. There are several types of feeding tubes to choose from apparently, but this one seems to be the best, especially for him. Here is a basic picture of the MIC-KEY button/tube. The balloon is located in his stomach and is what secures the button from falling out...if the balloon deflates, the whole thing falls out. The tube plugs into the top which is the only portion I can see and when its not in use the stopper pictured is plugged in to the button.

Remember that sweet tummy from the BEFORE:

It now looks like this in the AFTER:

Bobby was in recovery longer than expected. Not sure really why, even now. But I do know that he was to be admitted for a 1 night stay. It's Thursday - And we are still here. What followed was a consistently high fever (102+), swollen feet and hands plus general puffiness all over, and obvious pain and discomfort. At first, we were told that he would stay on his IV and receive Pedialyte until 3pm at which time we would try to feed a bottle and whatever he didn't take would be given by bolus feeding.

Bolus feeding is basically when the formula is inserted into a very large syringe which is attached to the end of the g-tube allowing gravity to push the formula into the stomach. Bobby's feeding issue is not centered on the fact that he refuses a bottle (as some babies do), but is centered on that at some point during taking a bottle, he begins to actually burn more calories than he is consuming, therefore, eating becomes less beneficial - even contradictory than intended. (i.e. His poor little heart works so hard just to eat it is, as the doctors keep saying, like running a marathon when everyone else is standing still.) So, as important as it is that he does not actually forget how to eat (Yes, forget! Who knew you could actually forget how to eat? Obviously, not my personal problem.), it is also important that he actually be on the positive side of calories too. He will still be given bottles, but at some point, he will receive the remainder of his feeding by tube. And in the evening, he will be put on enteral feeding which is where he will be fed continuously by feeding pump all night while he sleeps. Since he will not have to "work" for these calories, this is where we hope he will begin to put on weight and start making his way out of the "failure to thrive" category.

After the bottle (offered 4 oz, took 3 oz. by mouth), the remaining 1 oz. was given by bolus. Not much later, I felt a little wet spot on my stomach. I pulled Bobby away to find that his gauze was soaked and his stomach was leaking onto my shirt. The g-button was fine, but his stomach contents were leaking out of his incision. The nurse checked him (nothing seemed overly wrong, but she did let the doctor know). We were told that "oozing" was normal as they had just pierced his stomach to put in a large tube. Seems reasonable. I switch off holding him with my mother. A little while later, she feels the wet sensation to pull him back and find she is wet, the blanket he was wrapped in is soaked, and he is really "oozing" now. I would have thought that his whole bottle had now leaked out, but he continues to "ooze" for a few more hours which ends up with large absorbent pads and an ace bandage being wrapped around his middle section. All further feeding is stopped until the incision can heal more (as it cannot heal if liquid is constantly coming out of it). Over the next 2 days, the bandages get changed out and the leaking basically stops. He has stayed on constant fluids by IV. All meds were transferred to IV as well (in order to prevent them from oozing out of his tummy and not really knowing how much he was absorbing).

You know it's a children's hospital when the first visitors are a bunch of clowns. Literally, clowns. :)

We are trying a bottle this morning. First feeding since the "oozing" incident. You would think Bobby would be inconsolable with hunger, but no...He seems pretty content not eating. Hopefully, this will jumpstart his feeling the need to eat (as he has always been a poor eater and never shown the type of "immediate need" for food like Emerson did).

His weight is just one stepping stone...a BIG stepping stone...that we need to cross to get to his next heart surgery.

I have some more pictures to come when I upload from my real camera (not just my phone). :) Check back soon. I promise...I am back!

Robert is 6 Weeks Old!

Robert is SIX WEEKS OLD!

If I look back at the past 6 weeks, I sometimes think that time has stood still and it has been the longest 6 weeks of my entire life. At other times, I can't believe that 6 weeks have gone by either. I don't know if its because I compare the first 6 weeks of life to my only other experience - Emerson - or if its just exhaustion.

As for what Robert is up to these days...It pretty much includes sleeping. He sleeps ALL day. He does have moments of being awake, but those are fleeting and we make a big deal about it only to look down and see him asleep again. You can't help but feel sorry for the little guy, his heart is working really hard to keep up with his tiny body. And now that he has the shunt, it will actually be more tiring for his heart to keep up (having to pump more blood as he has the ability to send more to the lungs). Robert has perfected the sleeping through a feeding...and even burping. I still have to wake him in the middle of the night to eat.

We have had issues with feeding since birth practically, so just in the past week we have switched from Enfamil Nutramigen to Similac Isomil to Similac Alimentum. If you are just dying to know the reason...It includes blood in his stool (to be polite). He also had severe reflux (spitting up at any and all times of the day out of mouth and nose...gross)...The Zantac prescription has improved that problem greatly. But the other is still a work in progress. The Similac Alimentum was just started today. We will see how that goes. On the other side, I have had to restrict my own diet to a gluten free, soy free, vegan diet. Oh, the plethora of food options...[sarcasm]. Maybe the baby weight will fall off sooner than the previous 9 months after Emerson. For anyone else suffering along with me...Check out this blog: Collins Cooking.

So...to sum it all up...He probably isn't hitting any milestones. And its pretty much due to having to lie on his back, only being picked up like a newborn infant (the scoop technique), and sleeping through any type of interaction. He does seem to want to focus in on our face and study certain baby type objects we place in front of him, but it is only for a few minutes (if that long) until he falls asleep again. As for growth...I don't know how much he weighs exactly. He was 8 lbs 9 oz at birth and 9 lbs 3 oz before his heart surgery on July 22nd. I highly doubt he is over 10 lbs right now. He can still wear his newborn outfits and easily wears 0-3 months. And he is still wearing newborn diapers as the size 1's are too big.

As for Emerson (let us not forget the other child), she is insane. More energy than I have ever dreamed of having. With all this energetic enthusiasm, we are all learning the value of "time out" this past week. I am not sure if that is the best form of 2 year old punishment. But she has been acting out...I don't know if it is the fact that she is 2 or we have been transferring her back and forth from us (home or in Birmingham) and between grandparents almost daily. Nothing has been the same for any of us for a long while.

As for the next week, we will be traveling back home! We have 2 more doctor's appointments before we make the drive. And then hopefully, using the weekend to become acclimated to our house again...I just hope our pool isn't green upon return.

One more picture before I go...Robert sleeping [shocker!] in the Moses basket. The blue bean bag came from his last hospital stay in the RNICU. These are made and donated by volunteers from Threads of Love. It gives the babies a sense of security like being held. The nurses will drape it across their chest or shoulder when fussy...It's quite effective actually. We have continued using it when we have to put him down to do things like eat...or blog. :)

Picture Recap

Robert's stay in the RNICU at UAB (his first 10 days)...

Check out those sweet lips!

Going home!

The umbilical cord is still hanging on...

Sitting in wait in the ER at USA Children's & Women...

UAB arrives to pick-up Robert...Robert now says he only flies private. (Hahaha!)

And off he goes...

Back at UAB in RNICU...

Big sister, Emerson, and "Bobby"...Dr. Emerson came to try and fix "Bobby"...Thank goodness for insurance...!!!One last family picture before surgery...Phillip giving Robert a finger shake before surgery...Stay strong, little guy!
The nurse and respiratory therapist preparing for transport to the OR...
Robert looked back at us like this the entire walk from the RNICU to the OR...
Our drop-off at the OR. This is where we said our "see ya later's"...In the CICU, following surgery...
A day later, Robert is slowly coming off medications and various tubes being removed...

Robert was moved to the step-down pediatric cardiac unit after 3 days in the CICU...

This is puppy...Our new best friend! :) (A gift from Emerson!)

Incision 1 week later...