Tuesday, March 30, 2010

Just One More Reason I Hate You, CHD...

Last night, Zachy asked me if I thought we were going to have another good Christmas this year.
I told him that sure we would
He then asked if we were going to have another baby this Christmas.
I told him that no, we wouldn't be.
He was so sad and asked me why. Then Dillon chimed in, "yes, why not?"
I had to explain to them that not all babies with CHDs live, and I could not handle losing one of them. It would just be too much.
Dillon said, "yes, but isn't it really rare to have three babies with heart defects?"
Then I had to explain that it is indeed, very, very rare...but it is also incredibly rare to have two with the same defect. A rare defect, at that.
Zachy then told me he guessed it wouldn't be a good Christmas this year,after all, not without a new baby.

Yes, CHD, we would have loved to have more kids, but you have ruined those plans for us. I hate you intensely because of that. I grieve the children we won't have, because of you. I hate you.

Thursday, March 25, 2010

Not there yet

Tuesday night, our family attended a Mended Little Hearts meeting. I've been somewhat involved in this group since moving here. It's been really hit or miss with the group because I often feel further out than most of the other families. I wanted to be involved to support people, just never got the opportunity.
Fast forward to this year. I'm right back where I started. So, we decided to get more involved in the group. I really want to be on the support side of things, and I really thought I was ready.
However, on Tuesday, the leader was talking about all the different aspects of the group. Be it support or being supported. She said we are all in different places on this journey. I was fighting tears the whole time, for some reason.
I guess I'm not as ready as I wanted to be.
It's strange, really. I feel like I'm in two different places on this journey. I no longer question why Zachy was born with TAPVR, but I do with Natalie. I no longer cry over Zachy, but I do over Natalie. I guess there are things that apply to both of them, like why did this happen twice? I should say why did it happen at all, but it's always, why twice.
I truck along, usually happy, but sometimes, out of the blue, this overwhelming sadness comes.
I just really don't know where I am. And I'm not sure I need to know. I guess I just need to be. Where ever, and however that is.

Friday, March 19, 2010

Unbreakable Bond

I have been meaning to write about this..and every day it gets better.
The bond between Zachy and Natalie is unbelievable.
Zachy tells her every day that he is so glad she didn't die, and that God let her stay with us. He truly means it.
He kisses her all the time and is always whispering in her ears.
Today, he asked me if we were going to have anymore babies.
I explained to him that I didn't know, because I couldn't have handled if either of them had actually died, and we weren't sure we wanted to risk that again.
He said, "that's why I want to protect babies. I want to be a doctor"
"oh really? A doctor that takes care of babies? Or a doctor that takes care of babies hearts?"
"A doctor that takes care of their hearts. I don't ever want a baby to die because of their heart"
This is the first time he has expressed an interest in being a doctor.
We have often asked him if he wanted to grow up and be like Dr. Bush, and the answer was always no.
Apparently, seeing what it does to someone, other than yourself, totally changes things.
He never used to really talk about his heart, but now he does.
He tells me, "me and Natalie have the specialist hearts in the family".
He loves her so deeply, and it touches me so much. They will be bound for life.
He is young, and time will tell if he becomes a pediatric cardiologist, but I can't imagine anyone more empathetic than him.

Monday, March 15, 2010


Dear TAPVR and your faithful sidekick ASD,
I'm writing to you because they say that sometimes it is easier to talk about your feelings in writing. I'm willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don't particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I'm not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor's minds. They will do x-rays to be sure blood isn't backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone's minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I'm sorry no one informed you of their ability to do that.
I don't like you. In fact, I hate you. And I don't hate easily. In fact, I can't think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat...no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I'm so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn't know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.

Friday, March 5, 2010

Coming out of my hole

I feel like I'm coming out of a hole.
When I'm pregnant, I tend to become a hermit. I really don't know why. I don't feel depressed or anything like that, I just like to be home with my family. The kids did their play, I helped with that, and there was always church involvement, but that was about it.
We are part of a home school group that meets every Friday for park day.
Last week was the first one we have gotten to this year.
This week, we have kicked school up into high gear and are back to our four day schedule. Usually, Friday is our catch up day. So whatever they were unable to complete during the week, gets done Friday.
Today, Dillon and Matthew both have a little bit of lap booking to do, and when I say little, I mean they both have one mini book to complete...which is not a lot.
Which all means we're hitting the park again today!
Last night, we had some friends over for dinner, so I got the house all clean for that. And that means I have very little preparation for Sabbath.
It's almost like a day off today! Woo Hoo!
I do have some picking up and laundry to do, and some errands to run, but for the most part, it will be a laid back day.
I feel like things are starting to move along like they did in the days before I was pregnant and in my hole. I like it.
And once the trees start to bloom, I'll feel even better! I can't wait! I'm so envious of all the people in the northwest who are talking about flowers that are starting to peek through the ground. I miss bulb flowers so much. I guess it doesn't get cold enough here to do to the bulbs what has to be done during the winter. So for now, everything is dead. That gets old real quick.
Spring is just around the corner though! My second favorite season.
Good times are ahead! I can feel it.

Thursday, March 4, 2010

The Wait

Part 1
.Part 2

The next morning, I was dying to get to my baby. Of course, I had to wait for my doctor to discharge me. Unfortunately, I didn't see her until about one in the afternoon. She had no idea that Natalie had been transferred, and immediately discharged me when she heard.
Matt took me to the other hospital, where I was finally reunited with our sweet girl.
We didn't get to stay too long with her because the cardiologist was there and took us into a room to show us the angiogram they had done that morning. He also told us she would be having her surgery on Friday or Monday. It was Wednesday. Later that day, we were told it would for sure be Monday. The reason for the wait was to get her eating well. Apparently, feeding issues are the main reason a baby stays in the NICU after surgery.
The end of the week was pretty uneventful. Natalie looked so good that it was very, very hard for me to tell my head she did indeed need surgery.
It was quite the emotional roller coaster, that week. For one thing, I had all the post partum hormones on board, and they were swinging.
The other thing was, when you are waiting for open heart surgery, you flip between being so thankful you get to wait, and wanting it done RIGHT NOW. You know, just in case they wait too long.
I wanted to be with her every moment, in the back of my head was the thought that this could be the only week we had with her. I don't know that you can understand that. I think any heart mom can, but unless you've been there, I'm not sure you get it, completely.
Unfortunately, there was no way for us to stay at the hospital. So we were commuting back and forth. This meant we were normally at the hospital from about 11 till 6. That wasn't nearly enough time for me. While we were there, I was nursing her, and pumping. She was feeding very well.
On Saturday, things started to change.
While we were there, her O2 sats were dropping. The alarms would sound at 75 and it was going off almost constantly. Finally, they just muted it.
By Sunday they had set the alarm at 65. Her sats were still low, and her respirations were up. So in addition to the alarms for her sats going off, the alarms for her respirations was going off as well.
Being her parents, this was so stressful for us. In our minds at any moment she could crash. Although, I don't think that's how it works, but again, as her parent, that's how your mind goes.
Sunday, Matt's parents also flew in to be with us. We are so very grateful for all the support from our family, and were very, very glad they came to be with us.
Monday morning was surgery. For some reason, she was the second case, so we had to wait on the surgeon.
In the NICU, we noticed her nails and lips were blue. The nurse said it was definitely time to do the surgery.
I felt like it was almost like watching someone die. Each day, something new happened. It was really rough.
We ended going to the holding room around noon. The poor baby was so hungry and crying like crazy by then.
I was trying to hold it together. All I could think about was what if she didn't make it through surgery. And the fact that after this, everything may change. I couldn't even hold her because she was attached to several lines. I just wanted to scoop her up and snuggle with her and nurse her. All I could do was rub her head and talk to her while she cried. At one point, it was too much for me and I just had to sit down. I felt like I was betraying her, sitting there and not being with her. I just felt so helpless. I shed so many tears, and said so many prayers.
Finally, they took her back. Again with the mixed feelings. Relief that if all went well, she would be fixed. Sadness to know that if all went well, she would be hurting. And fear of it not going well. I wanted to take her and just run and never deal with any of it. I wanted it all gone.
We headed to the waiting room to wait for what would feel like an eternity.
Finally, the cardiologist came to talk to us and tell us everything went well.
The tears just poured out. I was so very, very relieved.
We would head to the PICU for a bit of recovery before being sent back to the NICU.
In a way, the ride was just beginning. We didn't know what we were in for, and it would probably be what brought me to needing to write all of this out. It was very, very difficult, but that's a different story, for a different entry.

Wednesday, March 3, 2010

Caridologist appt.

I'm taking a little break from my story to let you know about Natalie's appointment yesterday.
She weighs 11 pounds 2 ounces now. I knew once the lasix was stopped she'd start putting on the weight, and she has. Almost 2 pounds in a month! WAY TO GO NATALIE!!
She has an upper left pulmonary vein that is narrow..however, it has always been narrow. If you look at the picture, you can see that it actually attaches to the lower left pulmonary vein. It's something that we have to keep an eye on. If it gets too narrow, it may need surgery. The doctor said that since it is only one vein, if she doesn't have any issues then it may not need anything. We'll pray for that!
Also, she has a bit of narrowing at the repair site. This is the one that will be more important. As she grows, the scar may or may not grow well with her. If it doesn't, then they will have to redo things and fix that. If it stays the same narrowness (is that a word?!?!) that it is now, it should be fine. Again, we're praying for that!
In a few months, Dr Bush thinks he will probably do an MRI to see things more clearly, but maybe not.
It feels like everything is wait and see! God really must think I need to work on my patience. Who am I kidding? He's right!!
Also, Dr Bush still thinks her rhythms are good. If she needs paced he thinks it won't be for "decades and decades". I'll take that!! None of this four year old business.
So for now, we wait. Which is good. I'd rather have that then some issue that needs to be taken care of right now.
Here are some pictures from before her heart was fixed.
The first is her pulmonary veins that are clearly, not attached to the back of her heart. The vein that they are attached to, isn't even supposed to be there.
The second is just showing how much bigger the right half of her heart was. It is all back to it's normal size now, thank goodness!

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