Patriotic Bela

I love this girl

{picture taken back in July by Ang}

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There is one happy, snuggled up little girl in her crib right now. We've been home a couple hours now and the minute we laid her in her crib she fell asleep. I keep checking on her and she seems very comfortable. She's so glad to be home. She'll need a few days to recover and some good rest.

I'm ready for my turn to crash now. I think I slept maybe an hour all together last night. Bela had a rough night and wanted mommy to 'hold you' all night. I wish yesterday morning I could've just had a tiny glimpse of her home sleeping in her crib tonight so that I could've spared myself some of the worrying of yesterday, (was that really just yesterday?) but unfortunatley that's not part of the deal. You have to go thru all the worrying because it's all such an unknown until it's over.

I said this during her 2 day g-tube surgery stay, and I'm saying it again, I honestly have NO CLUE how I did that for weeks and weeks that turned into months. I walked Bela around the unit today and saw many post op newborns fighting for their lives, and it is... I don't even know what the words are to describe it. It's humbling that Bela is where she is today, it's inspiring that these tiny heros are up there every day in the fight for their lives, it's heartbreaking to watch mothers standing over there fragile new babies, wondering if they'll have a tomorrow. It's frightening that it's a world our family knows so well, it's inpsiring when you see a 3 year old with 4 giant drainage tubes smiling at you from her hospital bed where she's been for over a month, it's a lot of things. It's very emotional, to say the least. It's a whole different world in there, and it's easy to forget that world when you've been home awhile. How very precious good health is, and how very often it is taken for granted..

THANK YOU to all of you who were praying for her. I received so many texts yesterday letting me know she was being prayed for and thought of and each time I read one it brought a smile and a beautiful reassurance. In those moments, they mean SO very much. When you're sitting there, staring at the wall, feeling so empty, and an 'just wanted you to know we love you and are praying for Bela' message pops up it's just what you need. We felt so much love, and that's what it's all about..

Being comforted by daddy while she was coming in and out of sedation

And now...Good night! :)

Oh, and one more thing... She did get that IV out. I held it on her while she was getting meds through it for the first 6 hours or so, and then as soon as she got her chance, it was out. And she was so proud of herself. They were very nice and allowed her to keep it out the rest of her stay.

Room 9

The relief I feel when she is back in my view is indescribable. Even though she's a little beat up, wearing an oxygen mask, and bandaged in a few places, she's done with the hard part and on her way to recovering.

She came back about an hour ago, a couple hours less that planned. :) After taking measurments they decided it best to balloon her aorta and were able to stretch it from 7 mm to 10 mm. Ideally it should be 14 mm so they may have to repeat this whole process in a few months from now to stretch it a little more. And then at her next surgery, when she is opened up, they'll most likely have to take the whole narrowed 'chunk' out and rebuild it using a piece of a vein from her neck. Sound complicated? Yeah.., we'll deal with that when we get there. And that's just the aorta! That's on top of the already complicated surgery.

The doc seemed pleased to get it from 7mm to 10 mm today so we'll take it. Should help alleviate some of the pressure build up in her heart for now.

I'm SO grateful to say she's back, everything went well and there were no major complications. At one point her blood pressure dropped substantially so they had to pull everything out, give her a heart med and some time, then try again. The second go around she responded much better and her pressures stayed higher.

She is sleeping right now, but was one MAD little girl when she came back up. She woke up and immediatley started pulling out her IV yelling, "get it out!" She was thrashing and her leg incision started to bleed and nothing was calming her down so they gave her some good ol' ativan and since it's her drug of choice, it calmed her right down. She will probably wake up again soon and be just as mad and get more drugs until the effects of the anesthesia wear off. But I'm pretty sure she's not going to give up on getting that IV pulled out until she's succeeded. I'm telling them she's one determined little girl.. they saw a glimpse of what I meant when she woke up. I'm SO glad she is.

I guess someone else is tuckered out too...

Not so good to be back

Bela is finally in the cath lab. She woke up this morning with yellow snot dried all over her face. I seriously couldn't believe it. The morning of her cath... of course. So I texted our NP and still came, knowing there was the possibility we'd be sent home. It took three hours to decide, but finally her cardiologist and anethesiologist decided she was okay to go ahead with it. It has made the nervous pit in my stomach that much worse. I don't know why that had to happen today. She hasn't been sick in so long.

When we were given the go ahead they asked us if we wanted to walk her into the cath lab. I didn't know if I wanted to or not, but figured if I could be with her that much longer I'd go ahead and do it. I had no idea what I was agreeing to. When we got in there they had the gas mask ready and had me hold it on her while I was holding her. I think it might've been one of the worst experiences I've had so far in this place. Seriuosly, I was a mess after that. As she arched and fought and wondered what I was doing and why she was feeling so wierd, I had to force the mask on her face and hold down her hands. She cried out to me, mommy, mommy. It seemed to take forever, and then finally her eyes started rolling into the back of her eyelids and she stopped fighting, limp. I don't know what was worse. Fighting or how she looked when it finally took over. I NEVER again want to see her like that, or do that again. It was just horrible. I usually hand her off to a nurse crying, but now I know that that is WAY easier.

I'm trying to get ahold of myself and stop seeing what just happened in my mind. It's just crummy being back here, in this waiting room, writing about her in a procedure. It never becomes easier, somehow I know that I will never just accept that this is her life, never just be okay with it, as much as it is completely her life.

I'm reminded by her nurse that this is just a cath. I know that. But nothing is 'just a' anything when it's YOUR daughter. It's just not easy, none of it.

Her cardiologist that is doing her cath said he'd have the surgeon come in to "just to be there in case." That's not what I want to hear, but he was clear and forward with us about possible complications, and I appreciate that about him.

Tanner just said to me, aren't they supposed to page us with an update? To which I responded, well it's only been 45 minutes. And he said, longest 45 minutes of my whole life. SO glad he's here with me. He loves his little girl.

We are in the waiting room with a family waiting for their son in a 6 hour surgery and I feel for them. There is nothing like waiting during open heart surgery. I am grateful we have another year before hers.

Waiting on an update.. Will write when I get one.

Thoughts..

The week of the 11th has come.. darn it. Bela's cath is on Wednesday. When everyone else will be sending their kids off to their first day of school, we'll be sending her off to the cath lab.
Today I was so grateful for church. I'm grateful to start the week off with it every week, but especially this week. Although I tried to make a comment in Relief Society about Wednesday, I'm not sure anything really came across. I wasn't even emotional thinking about what I'd say, but as soon as I started to talk, I couldn't get anything out. I think it was the first time I'd actually put it into words to anyone but Tanner. All the sudden I felt so scared. And then there were so many great friends that wanted to know more about it, what was going on, how they could help, what they could do for us. That is why I love my church. There is such a strong sisterhood of women ready to serve and help wherever needed. It was nice to get it out there. To know that maybe some of them will remember her on Wednesday and say a prayer for her. It is uplifting and helpful. I'm so worried about complications and my mind is very occupied right now. During sacrament meeting my favorite scripture was read:

For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind.

A wonderful reminder to me. There were weeks I read it everyday.
Today we talked about the possibility of Benson going on an airplane trip with Grandma and Grandpa Milne to a cabin on a lake in Washington from Tuesday to Wednesday. Of course my mommy mind starts to think of all the possible things that could go wrong. Benson gets lost at the aiport, he falls in the lake when no one is watching, he's sad and lonely at night. I have total confidence in my in-laws, it's just what my mind does. It's so annoying. Is that normal? I wonder if I am up to having a third piece of my heart walking around and able to get hurt and feel pain. You become a mother and your heart is forever changed. You feel the most incredible amount of love and joy you never thought was possible. And because of that you are also capable of feeling pain you never thought you could feel. It's a very vulnerable feeling. That's being a parent. For me, it's doing everything you know how to do and having hope it is enough. It's realizing how much you need a loving Heavenly Father and his constant guidance.

It's 10:00 at night and through the monitor I'm listening to Bela singing 'I love you, you love me, we're a happy family" over and over. Oh she makes me smile.
There are two sides to Bela's heart. One is fragile, broken, and overworked. But then there's the part that matters, and she has got more heart than anyone I know. This month I was supposed to be watching for signs of heart failure, but all she's shown us is her happy, energetic, non-stop heart. The one that is more powerful than the broken one. You would never know that her heart is struggling.. it's just another miracle in her life.

Baby #3

Yep that's right! We are very excited to announce that #3 is on it's way!