Tuesday, August 25, 2009

Monday, August 24, 2009

Cardiology update

Thursday's cardiology visit was great! For the past year or so we've been watching a leaky valve and the pressure in her aortic arch. For a little while there they were both considered moderate/severe, and there was talk of cath and talk of early surgery (20-24 months). The last few visits is went from moderate/severe to moderate to moderate/mild, and then on Thursday, completley MILD!! Beth asked us what our secret was, and Dr. Pophal said her echo looked fabulous, better than it's ever looked. If you've ever taken your baby in with that nervous pit in your stomach then you know what hearing that feels like! I wanted to take a couple victory laps around the office! I thought there was a good chance an upcoming surgery might be tentatively scheduled for the next couple months, and the thought of having that planned was just making me sick. But Beth told us that there was no way they were going to do anything with Bela looking as good as she does. Her heart just keeps looking better and better, and so there is absolutley no reason to do anything right now!! HORRAY!! They said MAYBE when she's 3 or 4, but not to even think about it for a long time!
Weight wise she was only up a few ounces, but she was up. I am going to consider that good. Beth isn't worried about her weight anymore and so neither am I. With regards to eating, I am going to start a feeding journal for her that I will be posting. I am going to be aggresively working with her oral eating. I think she is ready. There are a variety of foods she will eat now, and she is eating enough on her own to push her. I am not going to put anything (besides meds) into her tube during the day. I am just going to let Bela eat when she wants and how much she wants and write it all down. Of course there will be lots of assistance and some pushing (no forcing), if Bela really only ate what she wanted to eat it would be an ounce at each meal. It is going to be a lot of work for both of us, but we're going to see what happens. At night I'll give her an extra feed or two when she is asleep to get a little more calorie in her, but during the day she'll be eating all on her own. I did a couple trial runs last week and she did awesome, til she got sick. Her cold is pretty much gone now so yesterday was our first official day. Here we go.. Wish us luck!

Friday, August 21, 2009

Another Angel

Ethan returned home this morning.. Please, say a prayer for his family today.
What a courageous and strong boy, and an incredible 6 months on earth. We will miss you buddy..

Thursday, August 20, 2009

I hate germs!

Bela came down with something again.. SIGH...
Despite her hospital time, I think the thing that delays her the most is how often she is sick. I worry about it a lot.. how much can one little body, one sick little body, take? It seems like we just get a couple weeks of health in between being sick. Today will be day 3 which is usually always her worst day. She was up last night from 2 a.m until 6 a.m. I stayed up til midnight to feed her one more time because she didn't get enough calories or ounces in the day, and then at 2 am she was crying. She just wanted to be held and was okay if she wasn't put back in bed. SHe was however wheezeing a little when she breathed and she had a nasty little cough that sounds too much like croup. I could handle it until about 4 and then Tan took over. He took her downstairs and watched TV with her and at 6 he woke up to her head right up next to his, sound asleep. So sweet..:)
I already had a cardiology apt. scheduled for today so we'll go in at 2 and see what they think. I'll be glad to get a look at her heart and make sure everything is okay. And I hope the scale is nice today!! We've been working so hard for some weight gain!
Hoping it's nothing serious and that she'll be back to feeling good soon! I just don't understand how she catches EVERYTHING?!?! Maybe we're getting too relaxed. The last three weeks we have taken her to church with us all three hours. Maybe she's touching too much stuff while she's there and we should go back to going home with her... I dunno. It dosn't seem like all the other heart babies get sick as much as Bela.. am I wrong?

Friday, August 14, 2009

Rocking Chairs

I want to share this.. This is part of a posting off Paul Cardall's site.
A quick background on Paul: Paul was born in 1973 with a single ventricle, just like Bela. He has lived and survived longer than most. But his heart is now in failure and he is waiting for a transplant. He is married and has a daughter, Eden. If you want to be inspired and uplifted, read his blog!
This post just made me appreciate the little moments I have with my family more, and I thought it might do the same for you...

Our rocking chairs:

In lieu of our situation I said to my wife, “Go out and by our rocking chairs. I don’t want to wait to grow old with you. I would love to sit with you on the porch today!”

Lynnette brought home two beautiful chairs. The only problem is that we need a third chair for Eden. My sweet little girl is jealous and wants her own chair. She cracks me up. And so, tomorrow we’ll start looking for a third chair. The store evidently sold us the last two black rocking chairs. I'm sure we can find a pink one for our little diva.


Thank you everyone for being so nice to me!! I have the best friends in the world... I got so many kind comments after my downer post and it has really helped. I had a rough go for a few days. Well...I'll say more like a few weeks. I was just struggling with my own attitude and things were just getting to me a little more than normal. The vomiting nonstop there at the end was just what took me over the edge. After I spent and hour making it and feeding her, 10 minutes later as she's crawling on the floor, happily playing, up it all comes and all our work is wasted!! (and there's a big, stinky mess to clean up!) She didn't get any of the food I made, or calories I counted. And I am left just plain frusterated. That was how that month was going, and Benson was just being hard because he wasn't really getting too much positive attention. But...

this week I just decided I didn't want to feel like that any more. I honestly was not enjoying being a mom. And so I have tried so hard to rethink a lot of things that happen around here. I approach asking Benson to do things differently, and I try to make him laugh instead of cry. Help him pick up and make it a game instead of asking him 10 times, end up yelling and giving him a time out. I can't tell you what a difference this week has been! Just by trying to not get on him for all the little things that didn't really matter anyways.

And Bela is doing much better. I need to clarify that in my last post when I said 'formula' I was referring to Pediasure. I took the pediasure out of her diet completley and she has been throwing up much less. So we'll hope that continues. I think it was a combination of that and possibly a little stomach flu. It still comes up once a day or every other day. There was a time that I just wanted to be able to hold her, and I couldn't, and now she is lighting up our home. So a little throw up is okay.

And thanks to all your comments, I have totally realized that it was so DUMB to get so worked up over a GI appointment. (THis same GI doctor prescribed a med to Bela that turned out to be extremeley dangerous for a heart baby! Luckily I called to check with the Cardiologist first.. It made Tanner and I furious. So beware heart mommies, and always check with the heart docs first.) I really know by now that every dr. has his/her own opinion and they'll all give them to you, and sometimes they are just not right when it comes to Bela. We will continue what we're doing and learn from eachother along the way. We're a good team, her and I.

I am remembering how much I treasure my role as a mother. How important what I'm doing is. I have to give credit to prayer and scripture study because they have truly helped, once again.

Here's some pictures of Bela with her friend Addie who has come SUCH a long way! These two are heroes, they are both living miracles and have made medical history! Bela was the first to have the hybrid procedure here and survive and Addie was second, one month later. I love seeing them together!

I am really struggling with remembering to take pictures right now, and I promise (mom) that I'll get some more up soon!

Thursday, August 6, 2009

The heck with formula

I just heard Bela on the monitor and walked in to her room to find her gagging and retching and trying to rid her body of thick, nasty formula. For some reason, her body does not like the stuff. It was so thick she was choking on it as it came up and her poor little eyes were all red and bulging from gagging so hard. I picked her up and cleaned her off and held her little trembling body for awhile til she fell back asleep in my arms. I havn't mentioned her throwing up lately on the blog, but she still is, a lot, and I am SICK to death of watching her do it! It's so sad that it's not what she's choosing to put into her body that she's throwing up, mommy pumps it in her and how should I know when it's too much? It's sooo aweful, I feel so bad.

So we went to the GI doc yesterday (a brand new doctor who had just met Bela for the first time) who told me that she wasn't growing quickly enough. She had only gained about 4 grams a day and she's supposed to be gaining about 25 grams a day. Oh really? I didn't know that, no ones ever told me that before..

So of course she tells me I need to up her intake and calorie count. UGH! I just want to yell! I can't even get her to keep down the calorie intake she's already on! It's just too much for her! She's not just your 'average' baby! I know she's not growing great, but what am I supposed to do when what I am already feeding her is not enough, but she can't keep it down? So they suggested I try higher calorie formula at the same rate all night long. This is my 4th attempt with trying the higher calorie stuff and the 4th time she has forcefully vomited it, so I am done trying..

I have been feeding her a mixture of formula and homemade blenderized stuff. She keeps the stuff I make with real food down so much better than the formula, but let me tell you, it is not the easiest thing to do. I have to figure out calorie, protein, carbs, and fat grams for each meal I make and make sure they all total enough, but not too much. I also have to keep track of the vitamins and minerals she's getting(zinc, calcium, vitamin D and all the rest). Very time consuming. The end product is usually pretty thick, so I have to manually syringe it in her tube which takes about 45 minutes, and usually more than once it pops out of the tubing bc it's so thick and squirts me, her, the furniture, the carpet, the ceilign, and whatever else is in a 1 mile radius becasue I'm having to push it so hard. So sometimes I just want to substitute some formula in cuz all the work is done and it can be pumped in with no mess! But she hates it... So I'm a little stuck...

I saw My Sister's Keeper with some friends the other night and I could'nt help but see myself a little in it. In the beginning where it says that everything looks okay from the outside, but on the inside, there are cracks. At any time, your whole world can change. In the hospital scenes. WHen she said that having a sick child is a full time job. In the neglecting of the other kids.. you never mean to do it, but it just happens when one child has so many more needs. How she fought til the end and could never let go. I dunno, it made me think a lot.. For better or for worse, this is our life right now and I don't want stress and worry to consume it. There's times I've been better at dealing with it and times when I'm not so good at it. I think I need to reevaluate how I'm handling things right now and try to let the not so important stuff slide off me a little better. Whether I like it or not, I have to sit in doctors offices weekly that do things to her she dosn't understand right now and dosn't like. I will watch her time and time again cling to me and look at me with tear filled eyes. I will watch her vomit probably daily, until we can figure out how to get her eating and growing more regular. I will watch her struggle to do things that just come naturally and easy for other kids. She will miss out on a lot of things in life. BUT, there is SO much she will do. So much is IS doing. Once again, as I sit and think about her, she inspires me. She always waves to everyone and flashes them a smile when we go into any apt. She takes it like a champ, until she's just too scared to smile and wave anymore. But everytime we're done we walk out and I say, All done Bela!! You did so good and I'm so proud of you!! And she smiles and does her all done sign as big as her little arms can do it.

All done for now.. until next time.

Wednesday, August 5, 2009

Baby Ethan

I havn't had to request prayers for one of our heart buddies in awhile, but sweet baby Ethan is having a rough time right now. He and his family need prayers. He is under our heart friends if you'd like to read about his story.

Saturday August 22 @ 3:30pm. Come have a dinner picnic on the field, run the bases, tour the dugouts, get tickets for a 2009-2010 game, professional pictures. . . ALL INCLUDED while watching the Diamondbacks and Houston Astros game live on the jumbo-tron! We are selling tickets to this event to help raise money for the Heart Center at St. Joes. The Diamondbacks foundation will donate $20,000 to the Eller Heart Program at St. Joe's. Tickets are Adult $45, Children over 3 are $35. If you are interested in attending this, please let me know by Friday August 7th and I will get you tickets. Email me at averymilne@yahoo.com for more info.