Bela Girl

You know when life is being so good to you you wonder if it's your turn for something to happen? Is that a horrible way to think? I don't think I used to think that way, before Bela's medical issues came crashing down on us one day. I guess I just don't want to take one single day of my life right now for granted. Time is going so fast and there's so much good.. To name a few... 1. Bela is an eater. Such a simple thing to say, but what a HUGE accomplishment for her! Most of the time I knew that one day I'd be able to say that, but there were also days I was unsure if she'd ever get her tube out. It hasn't been easy since that day she pulled out her own tube. The first week was BAD. She was not eating very much and I was worrying myself sick everyday. We prayed like crazy during those days. There's only so much you can do to get your daughter to eat when she is refusing. She hit a really low point and now looking back, I realize that she ...

Bela today at the park.. tube free. I tucked her shirt in to keep sand out of it. You can tell there's no bump, just a perfect, smooth little belly. :) I wanted to documented our journey with good 'ol tube feeding... sorry, this may be long! I have been tube feeding Bela for 2 years and 8 months. The horrors of the NG tube are STILL with me. I cannot think about it without having horrible thoughts, but as Tanner always has to remind me, we did what we thought was best for Bela at the time. IF I could go back in time, (which is a very silly thing to say, because I can't) I would have NEVER subjected Bela and our family to that devilish little tube for as long as we did. Getting through a year with that thing was probably the single hardest thing on me we'd been though up to that point . It really was that bad. We tried and tried to get her eating before we put in the G-tube, but she was just not ready yet. I know that she needed the G-tube in order to learn to eat. It w...

I can't seem to wipe the smile off my face or find the ground.. I am elated! We are having another precious baby GIRL. More pink it is!! A baby girl with a beautiful, healthy heart with 4 chambers that I did count out loud. And then I cried. I realized as soon as I laid down on the table that I was extremely nervous. All the sudden I realized I was about to find out if there was something wrong and I didn't want to go thru with it. What if? I wasn't ready to handle it. But we had the same tech that did Bela's ultrasound and found her heart defect and she knew how I was feeling. So she went straight for the heart and right away up popped the most BEAUTIFUL thing I have ever seen. 4 chambers and a nice, big left ventricle. I don't think until right then I realized how much I'd worried I wouldn't see that, and it felt amazing to see it so clearly. I want to remember this.. The tech said on a little 8 ounce baby it is extremeley difficult to get as ...

Tomorrow is our 'big' ultrasound. For me, the 19 week ultrasound used to just mean finding out the sex of the baby. Now I feel like it's more of an afterthought, although still ultra-exctiting. I cannot wait to know if another baby boy or girl will join our family, but oh how I want to see a healthy baby on that screen!! I want to hear that everything is measuring perfectly and that the heart has 4 beautiful functioning chambers. I want to see them and count them. And then I might finally let go of that tugging worry that I've been trying to dismiss for 19 weeks. I'm so nervous, but I'm ready. I've started to feel some good movement this last week.. I just LOVE that part of pregnancy! I've been waiting {not so patiently} for those first movements.. It has been reassuring to me, and I'll take it.. Wish us luck! :)

I love this girl {picture taken back in July by Ang }

There is one happy, snuggled up little girl in her crib right now. We've been home a couple hours now and the minute we laid her in her crib she fell asleep. I keep checking on her and she seems very comfortable. She's so glad to be home. She'll need a few days to recover and some good rest. I'm ready for my turn to crash now. I think I slept maybe an hour all together last night. Bela had a rough night and wanted mommy to 'hold you' all night. I wish yesterday morning I could've just had a tiny glimpse of her home sleeping in her crib tonight so that I could've spared myself some of the worrying of yesterday, (was that really just yesterday?) but unfortunatley that's not part of the deal. You have to go thru all the worrying because it's all such an unknown until it's over. I said this during her 2 day g-tube surgery stay, and I'm saying it again, I honestly have NO CLUE how I did that for weeks and weeks that turned into months. ...

The relief I feel when she is back in my view is indescribable. Even though she's a little beat up, wearing an oxygen mask, and bandaged in a few places, she's done with the hard part and on her way to recovering. She came back about an hour ago, a couple hours less that planned. :) After taking measurments they decided it best to balloon her aorta and were able to stretch it from 7 mm to 10 mm. Ideally it should be 14 mm so they may have to repeat this whole process in a few months from now to stretch it a little more. And then at her next surgery, when she is opened up, they'll most likely have to take the whole narrowed 'chunk' out and rebuild it using a piece of a vein from her neck. Sound complicated? Yeah.., we'll deal with that when we get there. And that's just the aorta! That's on top of the already complicated surgery. The doc seemed pleased to get it from 7mm to 10 mm today so we'll take it. Should help alleviate some of the pres...

Bela is finally in the cath lab. She woke up this morning with yellow snot dried all over her face. I seriously couldn't believe it. The morning of her cath... of course. So I texted our NP and still came, knowing there was the possibility we'd be sent home. It took three hours to decide, but finally her cardiologist and anethesiologist decided she was okay to go ahead with it. It has made the nervous pit in my stomach that much worse. I don't know why that had to happen today. She hasn't been sick in so long. When we were given the go ahead they asked us if we wanted to walk her into the cath lab. I didn't know if I wanted to or not, but figured if I could be with her that much longer I'd go ahead and do it. I had no idea what I was agreeing to. When we got in there they had the gas mask ready and had me hold it on her while I was holding her. I think it might've been one of the worst experiences I've had so far in this place. Seriuosly, I w...

The week of the 11th has come.. darn it. Bela's cath is on Wednesday. When everyone else will be sending their kids off to their first day of school, we'll be sending her off to the cath lab. Today I was so grateful for church. I'm grateful to start the week off with it every week, but especially this week. Although I tried to make a comment in Relief Society about Wednesday, I'm not sure anything really came across. I wasn't even emotional thinking about what I'd say, but as soon as I started to talk, I couldn't get anything out. I think it was the first time I'd actually put it into words to anyone but Tanner. All the sudden I felt so scared. And then there were so many great friends that wanted to know more about it, what was going on, how they could help, what they could do for us. That is why I love my church. There is such a strong sisterhood of women ready to serve and help wherever needed. It was nice to get it out there. To know that...

Yep that's right! We are very excited to announce that #3 is on it's way!

Every summer I forget how hot it really gets here. Then the heat comes and I clearly remember and I wonder how we'll make it though. I love being outside.. I would spend all day outside if I could so it makes me so stir crazy! It's hard to entertain my munchkins all day inside. Bela asks to go to the beach pretty much every day. I wish we could too Bela! I had my IFSP meeting today, and for the majority of the world who doesn't know what that is, it's a semi annual meeting with a state worker assigned to Bela's case. Today we discussed Bela going to preschool on her 3rd birthday and it blew me away! She would still have to qualify for it, and both her therapist and her case manager didn't think she'd qualify because she isn't actually delayed in any areas. I'm getting her evaluated next month, and if she does qualify she'll start school in February! My baby! I do think it would be very good for her. Especially snack time. :) In regard...

Bela's cath has been scheduled for August 11th at 9 a.m, check in at 7 a.m. I'm so glad we're the first case. It's no fun having her hungry and not be able to explain why I can't feed her. It's just going to be another couple days that I put myself in the "I have to do this, there is no other choice" mode and get through it. I count my blessings everyday to have had 2 hospital free years. Amazing! She is doing so very great right now, I know she'll just bounce right back, and hopefully have even better heart function after.

This is for no special reason in particular, it's just time. This is one of those just for me posts..:) All about Benson at 41/2: You still LOVE superheroes. You newest obsession is Teenage Mutant Ninja Turtles. You love to play outside, especially riding your bike. You loved preschool and know all your letters and letter sounds and can write a few words, but you would not participate in your graduation. You stayed behind the door hiding when everyone else walked in the room. We were wondering where you were and you were nervous to come in. It made me smile because you're just like me. Then when it was time to say the poem I know you had memorized, you didn't say a word. Oh and you refused to wear your hat. But it was cute to me because it is just who you are. You're so creative and imaginative when you play. You love to make up stories and I could listen to them all day long. You still sometimes confuse yesterday and tomorrow and I think it's funny. Your be...

I'm going to try to end my blogging slump.. Not sure why my posts have been so few and far in between. Lots has been going on. We saw Bela's cardiology team just one month after the last appointment I wrote about because it looks like she's going to need a cath in July. This cath was very unexpected for me so it has taken me awhile to wrap my brain around it and get used to the idea. I DON'T want Bela to be back in the hospital and under anethesia and be cut again and of course whenever there's possibility of something going wrong, it worries me to death. But Cath's are something that I'm told she'll probably need about every year of her life, so I better get used to it. So anyway, I'm not sure the exact date yet, but it will probably be mid-end of July, and it'll be here way too fast. They need to get some real accurate measurements to get a better idea of what's going on in her heart, and they will most likely balloon open a portion o...

Yesterday Bela and I spent the day at St. Joe's. When I pulled into the parking garage she cried, 'no, no, no'. She was NOT happy to get her vitals done. She took off down the hall, threw a tantrum, then threw up everywhere. After awhile she calmed down enough to take her pressures. She loved her echo and happily watched Elmo during it, and smiled up at Gary who could sing along to every song. The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah! Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the ao...

...capturing my sweet, creative 4 year old and my adorable, miraculous 2 year old.

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