Bela Girl

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...