Friday, April 23, 2010

Our Words for the Day...

Radical and Nuclear.

Oh dear.

We are out of time. C is not growing like she should. She saw her cardiologist again yesterday, only 1 week after her last appointment, and he is really not happy with her progress.

At 8 months old C weighs around 13lbs, 5oz.

Yep. She is that tiny.

Although she has continued to gain small amounts over the months she is really not thriving. Looking at just her head she looks to be around 7 months (not bad) but when you look at her body from her chest down to her skinny chicken legs she looks to be around 3 months (very bad). Everyone is worried. Everyone.

Her eating is still atrocious. She refuses to take a bottle when she is awake and barely takes the bottle when she is asleep now. Her actually latching and sucking down a full bottle while she was asleep has always been our safety net. Now, she is refusing to eat a bottle at all and she is beginning to refuse her spoon fed items as well.

C does not have any mechanical problems with eating, sucking or swallowing. She does not aspirate. She has a great suck reflex. She has can suck, swallow and breathe just fine. There is no structural issues with her mouth, palate, tongue or uvula. She likes the taste of food (fruits, veggies, yogurt)...can't say she likes the taste of formula that much but can't really blame her there. She has not shown any real signs of being allergic to milk, the milk protein or of being lactose intolerant.

She just refuses to eat enough to make her grow.

C does have tons of gas issues which we think greatly contribute to her problem. She seems to be in a constant state of constipation with lots of grunting and straining. We still think she has issues with motility (her food not moving through her system fast enough). We know it does eventually move through we just question if it is fast enough for her. We also still suspect she has reflux although her vomiting is greatly reduced from what it was. However, she is not eating like she was either. We have decided to stop forcing her. When we do not force her she does not gag therefor no vomiting. She is still taking Prevacid everyday and maybe that is helping. Who really knows at this point? We certainly don't and apparently neither do her doctors.

So, the time has come. We are talking feeding tubes. We have a lot of appointments coming up in the next 2 weeks. We are to see another cardiologist in the same group for a second opinion. Our main cardiologist wants to make absolutely sure that C's main eating issues are in fact GI and not heart related. We have seen this other cardiologist several times and really like him. He does all the heart cath's and other invasive procedures and did C's heart cath back in November. We see the GI doctor again (we are going with the 3rd GI doc we saw...I know, I know its is hard to keep up). He is the youngest of the bunch but I felt he actually took the time to talk to me and was somewhat engaged with what was going on with C. C's main cardiologist and C's pulmonologist both like this one GI doctor so we will give him a second chance. However, if we are uncomfortable at all with him you can guarantee we will go somewhere else before anyone does anything to C.

After we go to these two appointments we meet back with C's main cardiologist and discuss the options. We also meet with C's pediatrician as well.

Don't you want to be us right now????

The main problem with C not eating like she should is that her other systems are beginning to be affected. Nothing big right now but it could become a huge issue if she does not start putting on weight. Also, her immune system is already compromised and with no extra weight on her she has absolutely NO RESERVES to fight off any infection. As her cardiologist says..she is fragile. Very fragile.

I know a lot of you probably have no idea what I will be referring to here but there is a line from the movie Dirty Dancing that I just keep thinking of over and over that perfectly describes where we are..."Baby, I am balancing on shit and as quick as that I can be at the bottom again." There you go...C in a nutshell. Except her bottom is serious hospital time and possibly not pulling through.

The other fun part of her visit yesterday is that her cardiologist thought he saw some possible obstruction of her pulmonary veins. Seriously. These are the same veins that were repaired back in December along with her Glenn surgery. We are really, really, really hoping that there is no obstruction there. If there is then we are looking at some more invasive procedures being done. Our biggest concern right now is that the cardiologist we see in 2 weeks will want to do another heart cath just to check both...her function for the lack of eating and the pulmonary veins. If there is an obstruction we are soooo praying that it can be handled in the cath lab and not with another open heart surgery. Ugh.

We have a lot to work through right now. Deep down inside I still have a small bit of hope that C will just turn her eating around and start gaining the weight before we have to actually place a tube. I am really not looking forward to more tests but we are absolutely going to insist on having everything re-evaluated and some possible new tests run to make sure that placing a feeding tube is the right option. This is not something that will be happening in the next few days but C's cardiologist wants to have a firm plan of action in place in the next couple of months.

Radical and Nuclear. I think we are getting it.

Sunday, April 11, 2010

Oh These Baby Seats

At least she is not falling out of it this time. She is mad at me because she has not yet figured out how to wiggle out of the seat with the tray on. Guess that is why she finally gave up and went to sleep. C does not do anything normal :)

Happy Easter 2010