Sunday, December 14, 2008

Happy 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 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 for awhile and most likely a G-tube. I'm not sure what to do about it and her lack of eating has been pretty frusterating. I'm hoping and praying that soon she'll decide eating is not so bad.
--She is however, starting to take more bites of baby food. Three days ago was the first time she actually opened up her mouth, choosing to eat. Three times a day I'd put her in her chair for what usually was a VERY frusterating 15 minutes and try everything I could to get a few bites down her. She just did not want to eat. But halleluja, every now and then she will open up for bites, usually just a few and then she's done, but that is a GREAT start! I've learned too that pears and sweet potatoes are all she likes. Bananas are NOT okay with her. She is also starting to eat little finger foods, yogurt melts being her favorite. That was actually the first thing she ever ate. I am SO happy (happy dosn't do it justice) about this progress. I'm hopeful she'll keep eating more and more..
--She's rolling all around and ALMOST sitting. She'll sit for seconds, sometimes up to a minute but still toples over most of the time. She still dosn't love tummy time by any means and usually just rolls right onto her back. So the crawling thing is not really coming along at all. The problem is I get about 3 minutes of floor time out of her before she's crying to be picked up again. I'm the weakest of the weak when it comes to hearing my babies cry and so I give in and pick her up every time. She is the happiest in my arms and MY arms only. This month she decided that no one else is good enough to hold her, not even her daddy who used to be her most favorite. So if she is not sleeping, she's in my arms. Not the best for learning to crawl, (or for my back) but I have to admit I enjoy the favoritism, and I LOVE to hold her..
--Because of her favoritism, it is impossible for therapists to work with her. we are starting feeding therapy this week and I'm gearing up for a disaster. She dosn't like other people very much, especially people who try to make her work. Her home therapy was not working so I actually asked for a new therapists hoping that might help. We'll see..
--Perhaps the most welcomed change...I'm not sure if everyone knows the severity of her reflux.. She threw up every single day of her life about 4-8 times a day, it was a rare thing if she did not throw up a feeding. About 4 weeks ago she just stopped. It was that quick. I don't know what did it, but I am sure glad for whatever it was. That more than anything else has changed life around here. I was so tired of watching her throw up, forcefully, and then scream in pain after.
--We were asked to participate in the St. Joe's Miracle Tour last month and were asked to share Bela's story. After her cardiologist introduced us and explained from the medical side of things how bad the odds against Bela making it looked, we got to show her off and share our little miracle with everyone.. I think it was one of those things that touched us way more than anyone else that was there. Revisiting some of what we went through humbled me. The Lord has truely blessed our family this year.

We were able to make it to California to spend time with me family and it was wonderful...the highlight for me was just the fact that she was 'healthy' enough to be on a trip.. I kept thinking about that the whole time and marveling that she was. I don't know why, but I still have so many memories and flash backs (maybe because this time of year last year was sooo awful) of doctor after doctor telling us that her prognosis was not good. Don't expect to have her long, if at all. I guess I'll remember that her whole life, and its a good thing because it reminds me constantly what a miracle we've been blessed with. I was very emotional at my parents ward when we were home because so many people came up to me so excited to finally meet Bela, the baby they prayed for. Everytime someone tells me they pray for Bela I seriously get a lump in my throat. Someone I admire so much told me that it was an honor for her to have been able to be near such a noble spirit. I was very touched by that. It was a great trip.. We even made it to the beach and Disneyland. Bela was an angel the whole trip, I would have to say she did better than her big brother..:)

I hope everyone is having a very merry Christmas time..

Maybe next year she'll like Santa a little better..

Sunday, December 7, 2008

Pray for Baby Jersey!!

Wednesday, December 3, 2008

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..

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!

Friday, October 17, 2008

Update on Bela

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 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's hair right out of the bath is SO curly!! She definaltey got the Woffinden curl. For those of you who don't know my family, every one of them except me has tight ringlet curls. I always wondered if one of my kids would get it, and I think Bela might have it..

She is still coming along really slowly with eating... SHe has no interest in anything whatsoever in her mouth. SHe forgot what her mouth is for... I keep trying to tell her she'd be so much happier without that tube down her throat, but we've still got a long road ahead of us until she is eating enough orally to get rid of it. We are going to discuss the possiblity of a G-tube tomorrow at our appointment... I have mixed feelings about it. While I am extremely tired of reinserting her NG tube down her throat and the constant rashy cheeks, I would love to be able to avoid a G-tube which would require another surgery. She will have another swallow study done in a couple of weeks and then we'll be able to really start working on eating with a speech therapist at home. I really hope she can remember how to eat and make some good progress there so she dosn't have to get one...

These two pictures are kinda funny but I couldn't really get a great shot of her new thing: standing!! She loves to be standing but it is so funny because her legs are the smallest little bird legs... She'll be fussy laying down and all I have to do is lift her up to a standing position and she's so happy.

We have an appointment tomorrow and it will be a long one, complete with an echo and lab work. Hopefully we'll get all good news. I'll post her weight when I get it..I'm hoping for some good growth. Last apt. she had lost weight, but she has done much better keeping her food down the last three weeks.
Other than that, we are just enjoying being together. Bela is such a joy to have at home, we love her more than we can say. Thank you so much to everyone who conitinues to pray for her and follow her story. We are so grateful for your love and support.

These sweet eyes of hers really tell a story.. :) We love you Bela girl!

Wednesday, October 8, 2008

A vida feliz

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. There is so much good in my life, and I will choose to focus on that. I just had to put Bela's tube back in because she pulled it out, check it for correct placement, restart her feeding pump, mix milk for her night feeds, and give her 4 meds. And then I just got to stare at her for awhile, kiss her sweet head, and marvel at how blessed I am that she is mine. Everynight before I go to bed I like to go into my kids rooms and just watch them sleep for awhile. Most nights it is an incredibly powerful moment for me. It is usually then that I realize that I am living my dream... how lucky am I? My husband is more than I ever dreamed he would be. I think sometimes I take for granted what we have.. we are two people who complete eachother perfectly. He has been my strength.. I am thankful tonight for him. I am thankful that I have a beautiful son and a beautiful daughter. I am thankful that Bela is here with me. It's hard to put into words what it feels like when I look into her crib and see her smiling up at me when there was a time I didn't know if I'd ever get that moment. For that reason, every moment becomes so special, and it makes life incredibly sweet. Without all that has happened, I'm not sure I would understand that as well as I do, or stop to think about it as much as I do. I don't think I'd take the time as much to treasure the simplest things in life that are the most important and precious. Watching Benson and Bela play together the last few days has been one of those precious moments for me. Benson is starting to let himself get attached to his sister, and she is quickly becoming his best friend. Bela is doing wonderful, she is eating better, sleeping better, and most importantly, she is feeling better. I am enjoying her so much and feel like we are finally just starting to get to know eachother. I have longed for this day to come, and I really believe the worst is all behind us and the best is yet to come!

Playing together.. Benson is sharing his most favorite things with her, but... I'm not sure she thinks they're as cool as he does..

Monday, September 29, 2008

Slow progress..

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 its all I do! Especially when she throws it up...I get her cleaned up and do it all over again. We have seen improvements in the last few days since we made the change so I hope she can keep that up. We got her off all her medications that she was addicted to just a few days ago and I've noticed lots of improvements since then too. She still isn't sleeping very good and I'm sure it has a lot to do with the throwing up since she is never full and content. She takes maybe two 15 minute naps all day. I try soo hard to get her to sleep, then 15 minutes later something wakes her up, whether it's to throw up or because she's in some kind of pain. I hope that gets better, for all our sakes. She just likes to be held and walking around, so it gets very tiring, and by the afternoon she is just so exhausted. She is still sleeping okay at night, she does wake up and throw up sometimes, but she sleeps pretty good. We're heading in the right direction, it's just a long road...
It's still just so wonderful to have her here, although she is my drama queen and is extremely high maintenance, she is an angel and we love her to death. She has the ability to just comptletley melt your heart with her smiles..
We have our second apt. with the cardiologist tomorrow since the surgery and I hope we get all good news. I think we will...she seems to be recovering little by little. Her coloring looks much better and her breathing sounds better too. She paralyzed a vocal chord while intubated so she still sounds hoarse, but it'll come back on it's own in a few more weeks. She probably won't have gained much weight from all the throwing up, but as long as her heart function is good, all is well. We'll work on the feeding issues.
SHe's started some therapies, but they don't do much work with her yet since she is still in recovery and has some serious stranger anxiety...wonder why. HOpefully we can start speech therapy soon and get her eating even a teaspoon orally. That would be a start!
So we're doing survival mode most days, but we are getting through and are being blessed along the way with some very sweet blessings. Thank you for being concerned with us, lots of people have called and asked how things are since I haven't posted. It's really hard to get around to updating when she dosn't sleep, so I'm either feeding her or holding her pacing the house... sitting does not work for her. It'll be a great day when I can sit down again..:)
Thanks for all your continued help to us...I know it's been 7 months, but we are still grateful for any help we can get!

Hey...that turned out to be a pretty lengthy post! Til next time, here's some pictures of the last couple weeks...

this is probably my favorite picture...she loves her brother..

and her brother loves her. It is so nice to not be so scared to let Benson get close to her for fear of her getting sick.

I realize there are a lot of bumbo pictures, but she is just too darn cute in that thing.. She only lasts for about 3 minutes before she decided she'd like to be held again, but it's a start..

My brother Jordan and his wife Lauren welcomed their first baby into the world last Friday. I got to be there for the birth and it was a very emotional experience for me. He is just beautiful and perfect. I was amazed the whole time at how calm everything seemed to be and I decided that I'd like to do it that way next time I deliver..:)

Benson likes to be 'just like Daddy!'

Her tiny little hands and feet... But look! Her arms are filling out a little! :) I love how she looks posed for these pics.