Monday, August 31, 2009

Serious Dilemma!!

I have a serious dilemma... and for once it has nothing to do with Ellie's heart or her health (can I get an Amen?) I am sitting here catching up on all-things-internet when I realize that my blog is The Many Adventures of Bubba & Magoo... not "Bubba, Magoo... and whatever else children end up in our family. So what do I do? Do I start a new one? Or just hope #3 never notices that he was left out?

p.s. Magoo is still going strong. Still PINK. She ran around the house today while playing outside with Chris and didn't even get out of breath!! Gotta love it!

Saturday, August 29, 2009

Our princess is PINK!

When we were pregnant for Ellie I remember them preparing us for how "blue" our baby would be. Honestly, when she was born she was rosy pink and didn't look like she had a thing wrong with her. That quickly came to an end and I can't remember a time when Ellie did not have purple lips, finger tips, and toes... wellllllll NOT anymore!! Our girl is PINK, bright beautiful PINK, head to toe!! It's amazing really. I'll post a picture I took of them today when we get back to Jersey.

We went in Thursday for our pre-cath tests. She did great and only freaked out about the blood draw, which Chris bravely handled while I sat in the waiting room with Charlie. Friday we were first case for the cath. They had trouble gaining access through her right femoral artery (I think that's what it's called, but I know the abbreviation is RFA, LOL). They entered through her left and had success. Her Fontan pressures remained low with a balloon sealing up her fenestration so they went ahead and put "the device" (which is how they all refer to it) in the stent and closed up the fenestration. They also ballooned her left pulmonary artery, which has a stent in it from a previous cath because of narrowing. She required no coiling of collaterals and the doctors were happy there was no leakage or regurgitation in any of her valves... which is pretty significant. Most HLHS kids of a little of both I guess?

It took a little while for them to get her on the vent and then gain access through her groin, but once they did it only took an hour and a half. I think in total we were away from her for less than four hours. When we got the call to go back she was just waking up and very agitated. The next hour and a half were the hardest because she was still pretty doped up and hard to reason with. She wasn't easy to calm and was completely freaked out by having IV's in both of her hands. She just kept waving them in front of her face and screaming. On top of that we had a know-it-all nurse that came in and told me basically that I was over stimulating my child. I know she was just trying to help, but her tone of voice really pissed me off! We know Ellie. TV calms her... and guess what? We were right! All it took was some Dora The Explorer and she was quiet and calm. LOL At this point her oxygen saturation was 100%, which is quite insane and still hard to believe. She never dips below 95!! Before the fenestration closing she was 73-78. Of course the day we went in for testing she was 85... but that is SO not the norm for her!

We were discharged this morning a little after 8 a.m. She has been doing so well. She already seems to have more energy and breath. It's truly amazing. We have to keep telling her to lie down and relax a bit so she doesn't make the incision site bleed. I think the only challenge we have left is changing the band-aids. Ellie doesn't have many fears considering how much she has been to the doctors and in and out of hospitals, but tape and band-aids are always an issue. She still has her lead stickers on! We told her she could take them off when she's ready. The groin band-aids need to be changed every morning for the next three days though so those she really doesn't have a choice about.

We have had a minor set back in the potty area because she doesn't want anyone to touch her. She thinks everyone is going after her band-aids. When she first got out they had clear medical tape over gauze covering the two incision sites. She threw up after having a pop and a half. When she threw up she caused a rebleed so they immediately had to call in help and put a lot of pressure on it after ripping off the tape. She hated that and the new covering was pulling at her skin and she couldn't even walk. That has caused some major emotional trauma. I'm hoping in a couple of days it will just be a distant memory.

I am thinking of just putting her in a pull up the first few days of preschool and hoping the teachers don't notice. I just don't want to push her. She really just needs to trust that nobody is going to hurt her when she takes off her shorts. Poor kid.

Other than the band-aid issue though, she really is doing so well. We are considering heading back home to New Jersey tomorrow depending on how Ellie is feeling. We were nervous she wouldn't be able to handle the car ride, but now we think she might be able to. We'll see tomorrow I guess!

Monday, August 17, 2009

Amnio... check!

Today wasn't so bad. As I have told a number of you already, the shot in the ass from the Rogam shot was way worse than getting stuck for the Amnio TWICE! The first time he (yes it is a confirmed HE!!) moved right for the needle so they had to find another spot. We should have the results Wednesday night or Thursday morning. I'm not really worried about it right now. I do believe in the power of positive thinking, but it's not even like that. I just honestly feel like he is healthy and will be born with no VSD. The VSD is so small that at least four professionals have told me that they would be surprised if it didn't close up before birth. They also added that if by chance it didn't it's already so small that it shouldn't present a problem after birth.

My only concern comes from hearing that sometimes a VSD is part of a larger heart problem that they can't yet detect. The amnio will help with part of this, ruling out any type of chromosome issue. We are also getting checked for the 22q deletion, which is also called DiGeorge Syndrome. We got checked for that with Ellie as well. Oh and we are part of a super cool research study where they look at each chromosome for me, Chris and the baby and carefully look at each strand of DNA for any deletion, shading, anything out of order, stuff like that... it's called a something-array-something-or-other (I am very technical, I know). We won't get the results of that until after the Amnio and DiGeorge results.

Given that the VSD could be a sign of a bigger problem, I don't know that I'm comfortable waiting until 30 weeks for the next fetal echo like they originally suggested. Originally I was supposed to have one between 22-24 weeks and then a final one at about 35 weeks. I think I'm going to ask them to go back to that original plan. I go in for an anatomy scan on September 9th. It will be nice seeing him on ultrasound again. He is already a cutie! Today, we caught him sucking his thumb.

The only thing I worry about is the fact that if something is chromosomally wrong and we choose to terminate I will never be the same person again. Nothing in life will be the same. Nothing. I am hopeful that this is a decision we will never have to make, but like anyone would naturally, my mind does go there on occasion.

I am still a little crampy from the procedure. I have been on the couch since I've been home. Heading to bed now. I can't lift anything for three days. Woo hoo no laundry! If I don't have any issues tonight and tomorrow I can be confident that miscarriage won't be a risk I have to worry about. The odds are 1 in 400 and I lucked out with the best doctor in the practice. He was really funny too and I was giving it back to him as quickly as he was dishing it out.

I am so ecstatic that #3 is a boy. And no I didn't cave as most of you thought I would. At my fetal echo last week they were looking at the baby and I swear I saw a penis. After having so many ultrasounds I usually know what I'm looking at, so that pretty much ruined it for me. We found out for sure today because I had already figured it out. Anyway, we think we have a name we both love and Chris just told me he wouldn't kill me if I let the cat out of the bag. We like the name Nathaniel Scott Luis and we'll call him Than. We had a friend in college named Than and for the longest time I never knew what Than stood for, but I loved it. So we aren't really naming our kid AFTER him, but he did give us the idea because he's the only Than we know. I should also mention the name isn't 100% so don't go out ordering embroidered blankets or anything. I need to mention that because my sister is crazy when it comes to spoiling my kids. It's just the first name we both got excited about and we came up with it the amnio room and it just got me really excited for #3. I am already picturing my boys four years from now in bunk beds!

Monday, August 10, 2009

Such a big girl...

Magoo has been such a big girl. She really is just so smart. I know that all Moms think that about their kids... but I'm different, because I'm right. She is sitting here practicing her letters. So exciting about starting school in September. My biggest fear is that she is going to get kicked out for having one too many accidents. She's peed on the floor twice today and had countless accidents this weekend while my parents were here visiting. It use to be so frustrating, but now I am just at a loss. I keep telling myself she won't have any problems at school. Kids are different when they are around other kids, right? Ughgh. I'm just going to feel bad if she's "that kid." I remember having an accident in Kindergarten and waiting in the bathroom while my godmother brought me a change of clothes... I'm 30. I shouldn't remember that, but I do. Granted, it was Catholic school so who knows what kind of shame they tried to lay on me :)

On another note, I stopped nursing Bubba last week. I think I pumped once on Thursday and that's it. My poor boobs hurt for so long. I forgot what it's like. I am so unbelievably sad. Much more upset about not nursing than I thought I would be. I was sort of looking forward to it. I have cried about four times. After the first two days he was taking the formula fine. He doesn't have any issues. I have many. I know that this really is the best thing for him and #3. By the time #3 gets here he won't feel like he's being dumped and abandoned because I am nursing #3 and not him. I have a few months to have my body (somewhat) back. I'm not as tired as I use to be, which is better for both Bubba and Magoo! I was just surprised by the emotional attachment nursing brings. I never expected it, but it was pretty great.

Saturday, August 8, 2009

Charlie doing the leap frog....

It's short, but it gives you an idea as to how Charlie is getting around these days :)

Tuesday, August 4, 2009

Slow Cooker Lasagna

Another recipe from my current favorite cookbook.

Makes 6-8 servings
Ideal slow cooker size: 6 quart

1 lb. ground beef
2 29 oz cans tomato sauce
8 oz package of lasagna noodles, uncooked
4 cups shredded mozzarella cheese
1 1/2 cups cottage cheese

1. Spray interior of the cooker with nonstick cooking spray.
2. Brown the beef.
3. Stir in tomato sauce. Mix well.
4. Spread 1/4 of the meat sauce on the bottom of the slow cooker.
5. Arrange 1/3 of the uncooked noodles over the sauce. (You may need to break them up so they fit nicely).
6. Combine the cheeses in a bowl. Spoon 1/3 of the cheeses over the noodles.
7. Repeat the layers twice.
8. Top with remaining sauce.
9. Cover and cook on low 4 hours.

I also added onion to my hamburg. Next time I'll also add some Italian seasoning and add a sprinkle of cheese to the top about a 1/2 hour before it's done cooking. For a healthier option, consider using ground turkey. I also used reduced fat mozz and fat free cottage cheese.