Thursday, May 8, 2008

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.

22 comments:

The Ridgway Family said...

She is absolutely beautiful and it's okay to be a peanut. I too hope she reaches her goal weight, but I am confident that even if she doesn't she will do well. She has proven to be very tough. When are they planning her surgery?
We pray for you daily! Keisa

La said...

I love this post. I love Bela. She is so sweet in all the pics. Especially the one on the couch in the pink and white stripe jammies. I just want to pick her up and squeeze her, softly.

shannon davis said...

That was a great post avery. That book that someone made you is so sweet and it makes me so happy that there are such good people in this world that would do those things. Bela is so darling. She looks so alert and aware. I am glad things are on the upswing and just know that belas story is touching a lot of lives.

Jillian said...

she is so beautiful. her face seriously looks so perfect! I love that she is wearing the little outfit I got! I just love that outfit, I should have gotten one for me too! Im glad things are good, and stay strong. You are an amazing woman!

AL and ALI said...

Yay, pictures! She is so beautiful. So is that book! That is so neat. It is great that she is doing better right now. Have a happy Mother's Day Ave.

Erin said...

Wow Avery this was such a fun post to read!! So glad to hear that Bela is doing better and starting to get back on track. She is such a strong willed little girl with a very sweet spirit. It is always fun to see pictures, cute little peanut is definitely her. She has come this far because of very strong and faithful parents and a mom who deserves some kind of mother of the year award. You are doing a great job and your strength truly helps those of us who know you. I hope things continue to improve and you have a very special Mother's Day with both your beautiful children.

Heidi McMillan said...

Stick in there. I look back at Tylers first 5 months and don't know how we made it through. In my opinion things we went through at home were way harder than any of the hospital stays. There is always something with these little fighters. He had constant crying due to gallbladder malfunctions. Stick in there. Lack of sleep is emotionally and physically exhausting. These little ones do a lot of catch up after the Glenn. You are doing a great job!! Bela is BEAUTIFUL. I love the photo book!! All our love. Happy Mothers Day. You deserve a great one.

Ryan and Holly Gibb said...

She is just adorable. What a little fighter she is. You too, Avery. You are amazing! Bela is SO lucky to have such neat parents who love her so much. Thanks for the update and pictures. Love the one of her and Benson - very sweet.

Wendy said...

That book is the sweetest thing I've ever seen! That will be a cherished keepsake. Bela just keeps getting cuter and cuter every time I see pictures of her. I love her! I'm happy that you guys are being taken care of there. I wish I could do more to help you. I'll try calling again soon. I hope that things continue to improve for her!

Lily's Mama! said...

Such a wonderful update to hear. I am glad that she is diong well...but I know what you mean about losing the weight...every ounce counts...I can't wait to come home again...but we are still far from that. She is such a beautiful baby and is truly blessed to have such wonderful parents. You are going a great job...!!

Jessica Brimley said...

Hello- My name is Jessica Brimley. I got your info from Michelle Gledhill (Gracies mom). We also have a baby with HLHS and he is currently at Primary Childrens with Gracie. Our son Isaac, 4 months, had the Hybrid Procedure instead of the Norwood after birht. Michelle said that Bela also had the Hybrid. He will be having his "Glenwood" (the Norwood and the Glenn) this coming wednesday. The surgeons at Primarys have never done the two surgeries at the same time before. Isaac will be the first. He had to have the Hybrid because his lungs were too sick at birth and they didn't think he would survive the Norwood. So they tried doing the Hybrid to buy him some time to get bigger and stronger before they did the Norwood. I thought it might be nice to talk to another family who also had the Hybrid before the Norwood. You are welcome to visit Isaacs carepage at www.carepages.com. His carepage name is isaacbrimley. I am working on making a blog but for now we are posted at carepages. Bela is adorable and I hope things get easier for you. -Jessica

Jessica Brimley said...

Hello- My name is Jessica Brimley. I got your info from Michelle Gledhill (Gracies mom). We also have a baby with HLHS and he is currently at Primary Childrens with Gracie. Our son Isaac, 4 months, had the Hybrid Procedure instead of the Norwood after birht. Michelle said that Bela also had the Hybrid. He will be having his "Glenwood" (the Norwood and the Glenn) this coming wednesday. The surgeons at Primarys have never done the two surgeries at the same time before. Isaac will be the first. He had to have the Hybrid because his lungs were too sick at birth and they didn't think he would survive the Norwood. So they tried doing the Hybrid to buy him some time to get bigger and stronger before they did the Norwood. I thought it might be nice to talk to another family who also had the Hybrid before the Norwood. You are welcome to visit Isaacs carepage at www.carepages.com. His carepage name is isaacbrimley. I am working on making a blog but for now we are posted at carepages. Bela is adorable and I hope things get easier for you. -Jessica

John and Shelly Hyde said...

Ave... you are amazing... both of you. What a lucky little girl she is to have such devoted and faithful parents. We are still praying for your family.

mandy said...

I'm so happy they didn't have to admit Bela on tuesday. I kept thinking about you guys and was hoping for the best. She is so beautiful and that was such a sweet blog. Thanks for sharing the good news with us. We are having family night at the park monday with pizza and ice cream floats. Come eat and chat if you're up for it.

Jessica Brimley said...

I realized I forgot to include my email so you could get in touch with me: pbandj318@yahoo.com
Thank you again.
Jessica Brimley

Likes Chocolate said...

Hi! I loved the book. Our family will condinue to keep Bela in our prayers. The diahrea is most likely from the antibiotic. Our son had it too. Though once he was finished with the antibiotics it went away. He also had a hard time witht the extra calories. We took him off that and put in on a normal calorie of soy milk formula. He did much better. I don't know why, because now he drinks normal milk no problem. I hope you have lots of wonderful people who are helping you out, and don't feel guilty about taking help. People love the opportuntiy to serve. :)

Dave & Beth Green said...

Avery, I just read your post and saw all the darling pictures of Bela. I was so touched at everything you said and all the kind acts of service that are going on. I love the photo album. So sweet. You are the best mother. Happy Mothers Day! We are praying for you and your sweet Bela and family! Love you so! A. Beth

emcghee said...

Ave... what an amazing thing. I'm glad there are good people around helping you. I love you and your family.

Matt and Jennae Porter said...

Your posts always make me cry. I can't believe how busy you are taking care of this special girl... she really is a 24/7 job. What a beautiful book that you have, I love it! Happy Mothers Day!

Dallas & Krista said...

I am so glad to see that you guys are being taken care of. She is more beautiful all the time and I am so glad that you are able to be home with both of your kids to be so busy at HOME! Love you guys so much.

Simmons Family: said...

I absolutely love the book that was made, it is such a great keepsake. Bela may be tiny, but she looks like one tough little cookie. She'll have her growth spurt soon enough!! When aer they planning to do her next surgery?? I pray that you have some restful days OUT of the hospital and you can just enjoy your adorable Benson and sweet Bela!! Happy belated Mother's Day!

Andrea

ashley said...

she is so so so cute!

glad things are getting better, and hope for some weight gain soon! love you all!