Cardiology Update 03.30.2012

We went to the cardiologist this morning (Dr. Batten)! As much as I worry about R's little heart every.single.minute.of.every.day. it seems weird to me that we had not been to the cardiologist in over 2 months. But his BT Shunt is supposed to be so "large" that it will take him to 20 pounds easily. Nonetheless, I can't believe that we went 2 months without a check up! Here's a phone pic I took of my sweet boy while waiting for the doctor to come in:

Basically, if you don't remember from 8 months ago when the shunt was put in, the BT Shunt is usually only to last around 6 months...just enough time for the baby to put on some more weight or overcome any other health problems it might be facing. But in R's case, he has a coronary abnormality that means he needs to be big...his heart needs to be big...so the surgeons can *try* to cut around the coronary (that, of course, is in the wrong place or as Dr. Dabal put it...the worst place possible).

So the result of the appointment was Robert isn't any better or worse, nothing has changed and we wait until at least 20 pounds (5 more pounds to go!). It's good to hear, yet so frustrating!

I know most people just don't understand. I know they try. But I don't let him out of my sight. He still sleeps in my bedroom within arms reach (a myriad of reasons...heart issues being one...feeding pump being two...), he still sits in a bouncy seat in the bathroom when I need to shower, and I still tote him from room to room in my arms all the time. Robert has seats and places to sleep in almost every room in my home. What I think is most misunderstood about my life with Robert is that he is doing really well considering (you know, besides the heart defect, GI issues, feeding tube/pump, immune deficiencies, severe sweating, constipation, developmental delays, etc.), BUT I am the one that keeps him day to day, hour to hour, minute to minute. I see his ups and downs, his struggles, and his accomplishments no matter how small. I know exactly what is "normal" and sometimes its what no one else sees that is truly a concern or signs of distress. It's just hard to explain. But those that have been there probably can sympathize.

It is so different from my very independent Emerson. As they were both born in June, it is very easy for me to remember what she did her very first Christmas, Easter, etc. At this time, 2 years ago, Emerson was walking! I know she walked early, but nonetheless, she was walking. Robert hasn't rolled over yet. I think he could do it, but at this stage, he just doesn't want to or even know he can (that's what I tell myself). But he goes to PT twice a week and I have been able to tell a big difference in his activity level. Here's to rolling over within the week! He's oh so close!!!

Picture Day

My little Robert was SO CUTE today! I take a million pictures of him all the time, but he is always in a soft long-sleeved onesie it seems (it covers his g-button the best). We don't usually go anywhere (you know, germs and such...), but every once in a while, I get the urge to dress him up and take a few pictures. He sure is a cutie. He would be a perfect baby model because he loves to smile and turn his head for the camera. :) Look at this sweet boy! (This bubble was a gift from my dear friend, Courtney. She will be happy to know that R is finally wearing it (size 3 months...yes, he is almost 9 months old)!)

I really wish I had gotten a few pictures of Emerson today! She wore her adorable pink monogrammed top and ruffle pants. But she was too enthralled in Tangled and then it was throw it all on quick and get out the door so she could make it to Sunday School in time. That seems to be the case every.single.day.in.this.house.

I need to make myself take some new pictures of her this week! I just hope she doesn't end up being sick...She has been very whiny today and that usually means that she is on the verge of being officially sick. I foresee a doctor visit in my near future.

Today = Blah

Today has been a crazy day. I went nowhere. It was supposed to storm...or at least rain...or at least sprinkle. But it did none of the above. So I stayed home like a good heart baby mommy (yes - we still go nowhere when germs might exist). I didn't even drive to Starbucks or something of the like just to leave the house. Boring.

Emerson asked to watch Tangled twice...She's becoming quite the princess movie watching little girl. I hoped this day would come, and now that it has, I didn't quite think about how she would just want to watch the same exact princess movie over and over again. It's a really cute movie so I don't mind watching it over.and.over.again. But sometimes I would like to watch something else... anything else. Well, except for Team Umizoomi... (I am not a fan of the belly screen if you couldn't tell...)

Robert is quite the man-diva. (Is that a word? I think I just made a new word! Yea, me!) He likes to wake up slowly. By slowly, I mean, he wakes up very alert and wants the world to stop so he can "adjust" (i.e. no extra sensory activity than absolutely needed). Emerson, on the other hand, wants him to have every toy available at that moment. So she immediately goes off to round up these toys and bring them to him one by one. Sweet, I know... But really? Do we need all these (and on my bed nonetheless)?

I guess its just her thing...making a mess I mean. This is Emerson's room after her nap (see pic below). I have always kept toys out of her bedroom (it helps with sleep patterns...no distractions...). But now that she is interested in books (without my prompting), she pulls them out herself when she doesn't want to sleep (during naps and complete darkness at night). I guess I shouldn't complain...But I do get tired of stacking books by height (yes, OCD self is trying to force tendencies on 2 year old child - JUST KIDDING!). [Not really on the kidding part. I seriously wouldn't mind if she was super obsessed with keeping things in order.]

Mister Robert has been one needy baby today. He is extremely needy every single day, but today, I put him down only to change his diaper. I think I also got about 20 minutes of playing on his mat too. But I still had to be playing with him so that doesn't help me much in doing anything else. But my arms got a break at least. I do feel bad for Emerson on these days. She doesn't get much mommy time when he is like this. And it makes me feel even worse when I think back to her at this age, when I would let her cry it out (just a bit) so she didn't become so dependant on me. Unfortunately, Robert is not able to cry it out...think blue baby... His O2 sats drop into the 70s when he gets upset. Not good.

These pictures are actually from yesterday (Friday)...It makes me feel better knowing that we actually did an activity versus just doing whatever to just survive like today. She made her Granddaddy a picture. It may not look like much, BUT she used markers, glue, and scissors to create this masterpiece. Gasp! I know...Granddaddy better be proud. And it better be hanging in his office. Emerson has mentioned it about 100 times today wondering if Granddaddy found his tape yet (you know...to hang her picture).

It's almost 9pm now (exciting Saturday night, right?)...And I am blogging with a baby on my lap. He's *trying* to sleep. I say that because he sleeps a lot, but at the same time, doesn't sleep enough (at least long enough and hard enough apparently). I am beyond tired. I think doing a lot of nothing like today actually made me more tired than usual. It's times like these that I look forward to sleep.

Bedtime for Emerson is approximately 7-7:30. And it is definitely the hardest part of the day. She has always been a champ when it came to going to bed or naps. But in the past few months, it has just become a disaster unless she is beyond tired to fight about it. She sleeps well (for the most part) once she finally passes out, but its hard to get her there. I wish I was able to read her endless stories, lay down with her, etc., but I just can't do it. I have an 8 month old on a feeding pump with a heart condition usually crying in the other room. And unfortunately, when it comes to these types of things, he has priority right now. I guess this is when I would be able to tag team with that other person who should be actively involved in our home life, but that isn't an option. I keep telling myself, "this too shall pass". I sure hope so! It is heartbreaking hearing her upset at night only wanting me to stay with her. I just don't have any other option. I am not sure who actually reads any of this, but maybe someone out there can send up a little prayer for me about this. It really bothers me that I can't comfort Emerson when she is upset at bedtime.

On another note...I am trying to get back to my blog. I actually have quite a few posts that are still "drafts". I never posted them...Maybe its time to get those up so you can see what we have all been doing and, most importantly, how Robert has been progressing.