Scince I made my last post, a few people have asked me exaclty how much sleep we're getting now, 7, 8 hours? I WISH!! I guess I should've started with saying that we were getting about 2 hours and now we're getting maybe 4 or 5. Except the last two nights since I posted this she's decided to go back to fussing most of the night and so it's been more like 2 or 3 total. I wish these were at least 2 or 3 solid hours, but that's 2 or 3 total when all the 'naps' are put together. I still have no clue how we're doing it, I used to require about 9 hrs at night. We are being incredibly blessed is all I can come up with because somehow we are functioning through each day. Somedays more than others. The last two days I think I've felt more tired than I ever have. Bela hasn't been tolerating her night time feeds very well anymore, and somewhere around 11 or 12 is when it usually all starts. She fusses on and off allllll night long until I finally decide to turn her feeds off, or she decides that she's done trying to sleep when she feels so yucky and full, usually around 5. It really has been sooo frusterating latley, because we're giving her continuous food into her NG tube, but it just seems to be too dense or too much because she throws up every night around 3 times and we basically just wait until she does for her to feel releif. She'll sleep for about 20 minutes after she throws up and then it all starts over again. It seems so dumb to just keep pumping it in her then wait for her to throw up because we know it's too much! But what is more frusterating is that we finally figured out she needs that much to grow! She needs more than she can really tolerate. She was actually down an ounce again yesterday (bc of two terrible nights), and so we're now re-evaluating (yet again) to try to figure out how to get all of it in her without making her so upset. Just when I though we had finally got it figured out! SHe is sleeping much better during the day because her nights are so bad...a vicous cycle. Too bad Benson sleeps amazing at night, and not so good during the day. Oh well... So we'll keep trying to get the weight on her. I don't like that it's already June...surgery is coming up way to fast!! We're trying to work with her on the bottle because I want this dumb tube out of her nose for sure after her next surgery.. I would love it out sooner, but that's probably wishful thinking. She is taking the bottle great though, so if I'm able to get all that she needs in her through the bottle, we can get it out. HEr calorie needs will decrease after her next surgery, so it will be a definate possiblity then, and I'm going to do everything I can to get it out of her. I can't imagine having something shoved up my nose and down my throat all the time. Yesterday she threw up some blood (about gave me a heart attack), but luckily the nurse was here and called her dr. who said it was most likely due to her tummy being irritated from long term NG use. So sad! But I was soo glad it wasn't something more serious. It scared the heck out of me.
Other than all her feeding issues, she is so wonderful. I wish that I could just enjoy my baby more without ALWAYS having something to worry about. THat is the hardest part about all this..the contant worry. I sometimes have to remind myself that she is still a baby, not just a baby with a heart defect, and to just slow down and take time to just talk and play with her and enjoy her more. I used to be a failry easy going person, but not so much anymore. Can you blame me though? :) Hopefully we'll all be in a better place in a couple years and we can look back on this time and just be grateful we got through it.
On an extremely happy note...my mom is coming tomorrow to stay all week!!! Hopefully that'll mean some more sleep! I wouldn't be able to do this without my two incredible mothers and their help...

Smiles and Sleep....

Two things that are happening a lot more regularly around here.. I'm soo grateful for the sleep, and extra grateful for the smiles..:)

Bela..3 months old.












She prefers to sleep on Daddy's pillow. She used to just take naps on it, but Daddy gave in and lets her use it at night too. She absolutley LOVES it. We put her on it and she's out. She such a cute sleeper...






Bela was up another ounce yesterday!!! Yeah Bela!

No more broviac line!

Well...here we are at the hospital again, the only place I seem to be able to find a minute to do posts. We had to come in just for the day for bela to have a little procedure done. She got her broviac removed from her leg, (horray!! the long 6 weeks of administering her med is done!) and some sutures removed from her incision that were starting to poke through her skin and bothering her. She had to be put out and put on the ventilator, but it was taken out before she was even brought back to us here in the room. I was sooo glad that I didn't have to see her with that darn breathing tube back down her throat. I always get so worried when she's on her way back to us after a procedure for fear of how she'll look. It's so hard to have her taken from your arms peaceful, dressed, and tube free and to come back completley different. But this time was much better than the first two times... she looked pretty much her same beautiful self, minus a broviac and plus a couple little incisions on her chest. She had to have an empty stomach so the poor thing hadn't eaten since 3 a.m. so she was starving by the time she got to eat at about 10.
I think the best news of today was that she weighed in at 8.4!!! That's 6 ounces in 5 days!! She is finally gaining, and I can feel the stress I've been feeling for the past 5 weeks slowly starting to ease up each day that she continues to gain. I think we finally found her specific formula and plan that she needed, boy was it tough to figure out! Amazing that through all of her throwing up, she is somehow still gaining... Her reflux has been pretty bad latley and causing her lots of pain. We switched her reflux med to a little stronger one and hope to see improvements over the next few days.
We hope to be back home tonight. Bela's recovering perfectly. I have lots and lots of pictures to post of her, but they're all on the home computer so I will try really hard to get them up tonight. This is the only picture I have on this computer. It was taken a couple weeks ago.

My Daughter, My Hero.


I love this picture because it shows all her battle wounds of all she has gone through and she still has a huge grin on her face. It shows her amazing spirit. She fought a hard fight for nine months in utero, and has fought for the past three months of her life. Just to give you an idea of how hard she is fighting, 99% of Turner Syndrome fetus' spontaneously abort themselves during pregancy. She had to fight hard to be in that 1%. Of that 1%, most have a pretty minor heart defect or no defect at all, so she had to fight even harder having the most severe of heart defects. There's about a 50% national mortality rate for babies born with HLHS (no other condition), and here she is today. She's a fighter and I tell her every day that she makes her mommy so happy and how proud I am of her for that. I tell her sweet little eyes to keep fighting because soon all her surgeries will all be over and she won't feel so weak or so much pain anymore. I love her more than I can say.

She's starting to feel a little better and be a little easier (she dosn't require being in my arms 100% of the time, just about 90% :)), and she's giving us lots more of those wonderful smiles that make all of this a little easier to get through. In those brief little moments when nothing is hurting her and she shows me that she can be a happy little baby, I feel a sense of renewal. It is so hard to always see her hurting or upset, but time and upcoming surgeries will help her feel better.
Benson slept at Grandma's house last night (thanks grandma!) bc we were supposed to be here at 5 a.m., and when I was telling him last night that we had to go back to the hospital, he looked up at me and said, "I'm happy mommy." I think he could tell that I was sooo worried to tell my sweet little boy that we had to go back to the hospital for fear that he would think I wasn't going to come back home again for days at a time. Hearing him respond that way made me want to cry. Heavenly Father is blessing him to be happy during all this. I worry so much that he is not, and to hear him say that simple little sentence to me was an answer to lots and lots of my prayers latley. I am so grateful for the blessings that are being poured out upon us. i'm always so afraid of this experience hurting our little family, but I was reminded by my angel 2 year old that it will only make us a stronger and a happier family.

On another note, I missed my cousin Cason's wedding this last weekend, and that was really hard for me. I hope he knows that I would've been there in a heartbeat if I could have been. He married a beautiful girl and I could not be happier for him... He has always been one of my best friends and greatest examples. I thought about you all weekend long Case, I love you!

Bela's first 10 weeks

Make video montages at www.OneTrueMedia.com

A Perfect Day

I can't let this much time go in between posts because there's way to much now to update! The last two weeks have followed the same up and down pattern that we've been going through since Bela's birth, but as of today things are looking very up and we REALLY hope they stay that way. Since we've been home after her sternal debredement(the surgery she had for her infection) it's been non-stop craziness around here. Feeding Bela, giving extra feeds through the NG tube after I feed Bela, pumping to give Bela those extra feeds and her night time feeds, giving her 4 normal meds twice daily, her antiobiotic three times daily, getting the milk thawed and mixed with formula and setting up the pump for her nightime feeds, adding more milk all through the night, changing, dressing, re-dressing because of constant spitting up due to her acid reflux, holding her contanstly because that's the only way she's really happy, talking on the phone to all her doctors various times a day, dealing with bill after bill that keeps being filed wrong, her daily apointments with her two home nurses, appointments at St. Joe's, and monitoring her stats with her pulse ox are just a few of the things that are causing all the craziness. Then there's Bensons list which is almost as long. NOt complaining at all, that's just why I havn't really surfaced in awhile.. I'm busy, to say the least. It's a good kind of busy.
Last week Bela was having lots of diarreah and lost a whole 5 ounces. I know that dosn't seem like a lot but she worked too darn hard for those 5 ounces to lose them. Now we're pushed even further back from her goal weight so we're playing more catch up. She wasn't absorbing the formula she was on so we've switched her again. On tuesday she was back up 2 1/2 ounces (making her weigh in at a whopping 7 lbs. 8 ounces at 9 1/2 weeks old). She's such a little tiny peanut, and oh so cute. I'll post lots of pictures with this post... Anyway, today she'll get weighed again and we are really rooting for a couple ounces up. She also had a bad cough last week (from her big brother who got it from nursery..) and so was working so hard to fight off the virus that her little body couldn't do that and gain weight at the same time. Now that she's almost all better and we've gotten her on a formula that she tolerates better, we should see some gain. We're running out of time to get to her goal weight so we cant afford any more losing.
Because of that nasty little cough she got we had to go in and subject her to more tests, ultrasounds, and x-rays to make sure that it wasn't in her lungs or that it wasn't because of fluid buildup in her lungs. It was a particulary rough visit (for many different reasons) and after hours of putting Bela through the ringer it was determined that there was nothing to be worried about. I guess it is always better to be safe than sorry but on the particular visit it's hard to say that it was. This all happened on Tues morning and I came home from that apt so frusterated and exhausted. I came home to find a package waiting for me that had no name on it but said 'happy mother's day' on the front. It was the most beautiful photo book that someone made for me with pictures, quotes, poems, and exerps from our blog in it. I took some pictures of it and will post them. It was amazing and touched me so much. I looked through it multiple times and cried and cried. I had to do some digging to even find out who had done such an amazing thing. Thank you... Later that same day two of my sweet neighbors delivered baskets full of fresh fruits and veggies after I had told a few people that I missed having fresh stuff around to eat. Another friend of ours just showed up with dinner which made me cry because it was so appreciated after that day. At one point I looked out the window at our backyard and realized that the grass had yet again been mowed by someone in the ward who has just been showing up for a month now to do that for us. I was so moved by everyone's love and selfless acts of service. I had the chance to rock both Benson and Bela for awhile that night before we all went to bed and it turned out to be a very good day. Thank you all SO MUCH for all you do for us...we really cannot begin to express what it means to us. There have definatley been some very difficult moments throughout this and it has been easier to get through with your help. We know that the Lord both hears and answers our prayers through good people who are willing to take the time to serve.
So, more about Bela... She is soo good lately and we are enjoying her so much. She is DEFINATLEY very high maintenance and requires soo much attention, but she's worth it. SHe has started to smile like crazy and gives me the most smiles in the morning when she wakes up. It's my favorite time. She loves her nights with her continuous feeds. She sleeps pretty much through the night and wakes up so happy and content. I can't wait until the broviac comes out and I can actually give her a bath. She is almost 2 1/2 months old and she's never gotten a real bath, just a sponge bath. It's funny the things you take for granted...I'd love to just be able to do something for her that I know would be soothing for her.
I guess that's the update for now...here's some pictures.




Bela loves her peanut shell..


zooming out shows you how little she is...she's the same size as the scriptures..:)






Bela's book..





A Perfect Day

I held you all day
while you slept
you nursed with your eyes closed
I sang you a song
and kissed your soft face
your brother brought me diapers
and rubbed the top of your head
(maybe a little too hard but you didn't mind)
you looked around when you heard daddy's voice
I bathed you and you cried
you fell asleep wrapped in a soft blanket
in my arms
it is a perfect day
because
we are home.