Sunday, November 30, 2008

She's out!

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!

Saturday, November 29, 2008

A little scare..

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 doctors were contacted and they told them to ambulance us out here. So we had an eventful ambulence ride and got directly admitted. They took urine cultures and drew up blook work to see if anything would grow and so far nothing has. She was poked a lot last night, they finally got an IV in her foot that they havn't touched since. Turned out her urine had no signs of dehydration at all so no IV nutrition was needed. So it made eeveryone think she must have a viral infection. So after her many pokes, she fell right to sleep and slept great through the night. I watched her wake up this morning wondering how she'd feel today and got the hugest smile.. she is feeling SO much better. It's like overnight she got better.. She is completley back to herself today. I have no idea what made her that way yesterday, but whatever it was it didn't stay long or turn into anything, THANKFULLY! They want us to be here at least 48 hours to allow more time for the blood sitting downstairs in the petri dish to grow anything, but I've got a good feeling it won't. Hopefully we'll be back home by Monday.. On our way to the hospital I said to Tanner, gosh, I thought we were done with this to which tanner replied, we're never done with this, this is our life. Oh yeah, how quickly you forget...
Not really the way we had planned on spending Thanksgiving weekend, but always better to be safe than sorry... We're so grateful, SO grateful that everything so far has turned out okay..
No camera so no pics this time..we left in a hurry! Sorry!

Sunday, November 9, 2008

CHIEF Graduation

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 it without her. THe next picture is her cardiologist, Dr. Pophal. I was hoping to get a picture of her surgeon as well, Dr. Nigro. These three people are our heroes..

Notice Bel looking at her doc.. she's a big fan too.

This is the President of St. Joe's holding Bela. They were taking picture for publicity and Bela was chosen to be in her arms.. She did great and gave lots of smiles, although I didn't catch any on my camera..

This is Bela's boyfriend Mark.. She always gets so excited to see him. Mark and Bela had their 2nd surgeries a day apart so they're good buddies. Little Mark is still in the hospital with some post op complications, but he is getting better every day.. He's been such a trooper..

It was a simple thing, but meant more to us that I can say. It was a celebration of life and it was a beautiful experience to be a part of.

Halloween and hanging out

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.

Eating is such hard work!

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 her swallow will get stronger over time...

She's such a little mini in her highchair.

Sunday, November 2, 2008

She took a bottle!!!!

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 tube out sooner. So I kept at it, and I am so hopeful that she'll get it. She is doing better at the spoon feeding too. She will have a really good eating day, then the next day she'll vomit the second the tiniest taste of food hits her lip like she complelety forgot how to do it. It's been a couple months that we've been working on it, and she has made good progress. She used to vomit every time and scream. Now she will actually take a couple bites if I work her in slowly enough and if she gets enough praise while she's doing it. She's high maintenance even while eating... But she is getting over her fears little by little. She still gags when I stick a bite in her mouth, but most of the time lately it dosn't end in vomiting.
I have SOO much to update, and new pictures to post, but I just had to document this night.. I havn't been this excited in a long time!