Friday, August 29, 2008

Day 2

Today has been a little up and down. We were woken up around 4:30 because Bela was having a little crisis. Her heart rate should be in the 120's or so and it was about 210 for awhile. No one knew what was going on or why it was so high. That's the worst part. They gave her a drug that stops the heart for just a second, in hopes that it will start beating again right away with a better, slower rythm. They had the pacer wires all ready to start her heart again for her if it didn't start back up on it's own but thankfully it did. It jumped right back up however to the low 200's. The tension in the room was thick, or maybe I was just so nervous that's how it felt. We're not sure what is provoking these scary periods for her. Her heart rate has slowly been making its way down all day today, right now it is about 140, so the rest of the day has been much better. At one point a few hours ago her saturations came down again, not as low as yesterday, but they had to bag her for awhile (give her some manual breaths), and that helped her get them back up. The rest of the day has gone by pretty smoothly. We're still a little on edge though since they seem to come on so suddenly. Her goal for right now is to just stay calm and get some of the fluid off her. She is more puffy today as you can tell from the pictures, which is totally normal, but she should start to get rid of some of it now. She has been peeing a lot better this afternoon which is really good. Pray that she'll keep peeing good, because once she gets more fluid off we can hopefully move forward with weaning her ventilator settings, but it'll probably be a very slow process. That's okay though, whatever Bela needs right now, but I can't even say how hard it is so see her this way. I had a little cry today with another mommy of a baby that just had the same surgery as Bel, and we both were saying how much harder this time around is since we got our babies at home for awhile and know the lively, smiley version of them and not the one we see before us now. It's hard. I look at her and know it's Bela, but I don't see my Bela in that face. It's just so hard to see her so 'lifeless'. It's an aweful feeling, and I really have to not let myself think too much about it or it's too much. I just pray that she's not scared or hurting. I know that this time will pass, but when you're in it it seems like it never will. We're so proud of her though, she has been through so much and is doing so well. She has really liked to be sung to today.
They are doing an echo right now to look at her left pulmonary artery because it is a little small because of the band the was around it. I'm not sure what that means right now, but I'll find out soon I'm sure when they come talk to me. It worries me a little that they wanted to get another look because they just did one this morning. But then again, what isn't worrying me right now? People have been asking how I'm doing through all this.. Well, as you can probably imagine, not too great. But I'm trying to keep it inside, and keep the feeling in Bela's room calm and peaceful, like she needs right now. She knows that I'm right here and that I'm so happy with her and proud of what she is doing. Sometimes I'm better than other times, and I really do try and not think too much. I know that sounds wierd, but I can't let myself do that. It is incredibly difficult to see your baby go through so much. I remember coming to tour the floor before Bela was born and thinking that there was no way I could see my baby that way. But when it's happening, you just do what you have to do I guess.

I appreciate SO much all your comments. They bring me to tears most of the time. I'm especially grateful to all the heart moms out there who have been so supportive and encouraging to me through all this. It's comforting to know that others know exactly what we're feeling and going through, and that it does get better.
We are so especially grateful at this time for our faith and for the knowledge that families are forever. I am grateful that she is mine forever, and that I have a loving Savior that is helping us through this. I really do feel Him near.

Here's some pictures from today. We are almost through the first 48 hours, but I'm not feeling too much relief yet...if anything a little more nervous, but we are hanging in there. Things could definatley be going much worse, so there is a lot to be grateful for right now. She is doing very well for two days post-op.




12 comments:

Sally said...

Avery...you are truly amazing. I cannot imagine what it must be like and how you do it so well. I am glad that you have those heart moms that can actually relate. I think not thinking too much is probably the best thing to do...and give her kisses and sing to her. It will get better...

Kimmie said...

Hang in there, Avery! You are doing great!

Matt and Jennae Porter said...

Ohh little Bela girl, keep on fighting! She really does look great considering everything, but those pictures are hard to see, and I can't imagine what it's like for you. You are an amazing mom, Avery, Bela is lucky to have you there with her.

The Ridgway Family said...

Oh Avery, I wish I could give you a big hug right now. I do know exactly what you are feeling and it is okay to be emotional and to cry a little. You are so strong and as you said Bela can feel that. I truly believe though that she is in another place right now and not experiencing any pain or discomfort. Please know that we continue to think of and pray for you, Bel and your family. Please call me any time if you need to talk and want someone to listen. I would love to cry with you!

Love you, Keisa

S & K said...

Can I just say I want to just give you a big hug and tell you how INCREDIBLE you are! I hate to see any of you go through such a trial but if anyone has let a trial make them better (if that was even possible from the get go) you guys have, you are such an inspiration to me and I love you guys more than you know. I hope little Bela keeps on a fighting and that she stops giving her Mommy scares. Maybe this is her type of fun though!!!! :) Sneaky Bela!!! She is just too much for words and I seriously love her like she's mine! I hope you don't mind sharing you little miracle with me. Hang in there. I wish I was around this morning to help I have felt terrible all day.

Em said...

Bela is just beautiful. What an incredible spirit she has- thank you for sharing this journey with all of us. I truly am inspired by you, your family, and sweet little Bela. May God bless all of you, especially at this critical time.

Carmen said...

Avery, you are a great mom, Heavenly Father pick you for this amazing little girl, what a strong spirit she has. You are doing great, your faith and courage is an example, now we know where Bela get it from. You can do it Bela, we are praying for you.
hugs from the Cathey's

Carrie said...

Avery you are the most amazing woman I know. You are so strong and share your feelings and testimony so sweetly through your words. We sure do love you guys and think of you often. Bela is the luckiest little girl in the world to have you as her mommy!

Erin said...

Avery it was so good to talk to you today. I know it has not been easy but you are one stalwart and faithful lady. Your Bela is blessed to have you as a mother and like I said earlier the Lord knows who he can count on to take care of these little ones. Bela is not giving up and the Lord will be with her every step of the way. Know we love you and are grateful for our association with your family. You have made a lasting impression on us and have strengthened us in ways you will never know. We'll talk next week!!!!

Anonymous said...

Jophes says

Guys bela is a miracle and this experience is changing all of us. Healing healing healing is the word this labor day weekend

Jr, Suzie, Cole, Cruz, and Lindsay Dean said...

Oh, all of the wires and machines...I'm tearing up because I remember all of that so clearly and realistically, it wasn't long ago for us too. Then comes this October, and we do it again so I definatley feel your pain. I'm not looking forward to it either but as the saying goes......or if your cleaning your house :-)....it gets worse before it gets better. I truely think that Bela is now on the upswing of things and she will be as good as new in about a week. Keep peeing Bela! That will help you so much in your healing process plus the fact that we know that your kidneys are functioning properly! Avery,heart mommy to heart mommy, we are here for you (although in Michigan) and I hope your feeling the strong prayers that are headed in your direction each and every single day. Hang in there, Bela is YOUR daughter and will do great!
Heart hugs and love-
Suzie

The Andersens said...

you are all so amazing!! what amazing parents little Bela has! and she fits right in with her wonderful family! she truly is such a miracle. I'm so glad that she is improving a little each day. Grace just had her heart transplant, and I can relate to so many of the emotions as you watch your baby, trying to cry, trying to look at you. It gets better with each passing day. We will pray so hard for little Bela to have a speedy recovery and be back to her usual beautiful self very soon!