Bela Girl

It's been awhile since I've updated on how Bela is doing. It's so nice for me as a heart mommy to read up on the progress of other little ones to realize 1)I'm not alone and 2)she's doing some 'normal' things (for a heart baby). I can say (with a huge smile on my face) that Bela is doing BETTER THAN EVER, and life is getting so much easier . Things that have changed since last update: --Her entire life, I had to feed her every hour..it was the only way she'd keep down more of her food. It's all I did, finish one feed, start another. Over the last couple of months I have slowly increased her amount and have gotten her up to 5 ounces at one time!! It's changed my life! So now I just feed her 5 or 6 times a day over a half an hour and it's amazing.. I have so much time back! --She still dosn't want anything to do with drinking her liquids, no bottle or sippy cup can get near her lips. I'm coming to grips that she will have the NG ...

Pray for Baby Jersey!!

Under my 'heart' list I've added Baby Jersey. She is only a few days old and today will have her first open heart surgery.. sooner than anyone anticipated. A lot of you may know her parents Chris and Heidi Anderson. Chris is one of Tanner's friends from highschool, and this weekend when we were at St. Joe's we were right next door to them. A lot was going on with Jersey while we were there and it was finally determined that she just needs to have her surgery. If you know them, (or don't know them), please pray for them today and visit their site.. It is so helpful to have the support on the scariest day of your life..

All is well again around here... our sweetheart is sleeping peacefully in her own crib tonight. She woke up feeling so much better today and nothing had still grown from the cultures they took, so they sent us packing. Tanner had her home before 12...he must have been very persuasive, I never seem to get out of there that early. But it was the quickest stay and easiest discharge we've had yet. We still have no idea what made her so sick that day or so darn sleepy, but whatever it was, we are sure glad it is gone. We were planning our first little trip to CA on Friday (my parents are coming for a visit from Brazil!) but after Friday I was sure we weren't goign to be able to go, but by the way she is acting now, it still might be an option.. I sure hope so!

We've found ourselves here once again..yes, here meaning at St. Joe's. All seems to be well as of now... Bela went to sleep Thanksgiving night around 8 acting as normal as could be. During the night she woke up moaning a little and i got a temp of 99.9. By morning I took it at 100.6 and she just did not want to wake up. She slept until 10, woke up for a total of 5 minutes then fell back asleep until almost 2. She couldn't even stay awake, and her little hands and feet were cold and fairly blue. So needless to say we were worried. She was acting eerily similar to the ways she acted when she was in heart failure so of course we didn't wait around too long. We called our NP, and were on our way to Banner Gateway because we were thinking she was dehydrated. I had changed a very dark urine diaper that morning, so we were going in for some IV nutrition just to get her fluid levels up. when we got there though she seemed worse and her temp was up to 102.6, so our doct...

Bela Milne graduates! This was a celebration at St. Joe's honoring the babies who graduated from the CHIEF program this year (babies in the CHIEF program are those with the most severe CHD's who needed an intense home follow up program). We used to be seen once a week, sometimes more, and I would talk to Beth, our amazing nurse practitioner practically everyday before her surgery and for about a month after it. But Bela has now 'graduated', meaning she is much more stable and doesn't require being watched sooo closely! It is such a WONDERFUL feeling!! We even just moved to a MONTHLY schedule and we have clearance to travel! (not far and not by plane, but we'll take it.) So, Bela and all her miracle heart friends got their diplomas and graduated.. This is the famous Beth.. She has been as much a part of our life this last year as our mothers have been. She has put in countless hours (at all hours of the day and night) into Bela.. We couldn't have done ...

Halloween with my little tink eating her wings Bens and Drew trick or treating Playing at the park with Drew Random shots of the Smella (her affectionate nickname...not because she smells, just because it rhymes with Bella.. she smells really good.) You can see how she is growing (14 pounds 7 ounces!!!) and how well her incision is healing up.. and what a little beauty she is.

Here's some shots of Bela working on her eating.. She's still not too sure about it, and she gets SO tired after we work on it for jsut a few minutes. About half of the time she still vomits when food goes in her mouth, but it's getting a little better. It can get very frusterating..the most frusterating part is that she dosn't like to swallow the food, she just lets it sit in her mouth until her saliva mixes with it and it just drips out of her mouth.. Ugh.. She is really determined to not eat. We have to just keep at it... And as far as the bottles are going, that seemed to be a one time only thing..she must have been really out that night to not fight it because every time since then that I've tried, she won't take it. sigh..oh well.. She also failed her swallow study again, she still needs her milk to be about honey consistency. We were hoping for better results because aspiration is not something we want to mess with again, but I'm still hopeful he...

Bela just took 20 mls from a bottle!! I know that's less than an ounce, but that is HUGE for us!! I can't believe how happy it made me to give her a bottle and have her take it. This is only the second time she has even sucked on a bottle, the first time tho it was only a couple seconds. The only way I can get her to take any is if I go in while she is sleeping during the night, pick her up and offer it to her while she is pretty much out of it. If I offer it to her during the day she won't take it. I used to think she just forgot how to drink from a bottle, but now I know that she knows, she's just being stubborn and dosn't want to take it.. :) Actually, I think she is scared of drinking from a bottle because of all the vomiting she does. I was told at my last apt that I should probably just give up the bottle feeding and work on the spoon feeding, but I just couldn't do that. If I can just get her to take the bottle with thickened milk, we can get her t...

Bela is doing great!! I feel so much weight lifted each day that she continues to get better. You can just feel the difference in the atmosphere around our house...it is so much different lately than it has been for the last 7 and a half months. While there are things that are still very hard, things are much better. I of course will always worry about Bela as her future is still very unsure, but I don't feel that constant, sick to my stomach worry that has been my companion for the past year or so since we found out about her delicate condition. It was actually almost exactly a year ago from right now that we found out. It has been a long road, seems like FOREVER ago, but it is SO wonderful to be where we are at. She is just really coming alive latley and is so interested in checking everything around her out.. She is laughing now but Benson is usually the only one that can get her to laugh. It is a beautiful sound to hear... I love to see her happy, I longed for it... Bela...

Tonight I feel so happy. It is a result of having a moment to myself tonight to reflect on the 25 years of life that I've lived, and in particlular, the last almost 3 years that I have been a mother. As a child, I always dreamed of being a wife and a mother, so much so that when I got a little older I remember including my future husband in my prayers... that he was trying to live a good life in hopes of meeting me, like I was for him. I dreamed of my children that would one day be mine... I didn't know what they'd look like or be like, but I knew that it didn't really matter, I would love them. I didn't plan on having a critically ill baby, spending months in the hospital, or the pain of watching her suffer, but life never ends up just like we planned it to. And that is okay . Those four little words have taken me awhile to say and then to really believe them. It's okay because, although it's not what I'd planned, it's not bad, just different....

So slow...if you blink you might miss it. But it's definaltey getting better, and we'll take every little bit of progress that comes Bela's way... Anyway, I keep thinking I'm going to get some time here or there to write a good post on the happenings around here, but the time just never seems to come. So I'll use whatever little time I have left before Bela wakes up to write a little something. It's been a hard, sometimes very frusterating week. Bela is supposed to be getting better, but somedays it feels like she's getting worse! She still continues to throw up, about the same amount if not more than before. We took her off formula because it got to a point where she just wasn't keeping anything down and she seems to do much better with just breast milk. I add a little rice cereal to the milk since she should be eating that now. She throws up still, but seems to keep much more of it down. I feed her every hour for 15-20 minutes so it seems like ...