It was gonna come up sooner or later

There are two pretty huge possiblities when it comes to Haleys life. One is that with her PH her life will be shorter then we want, the other is with PH it is dangerous for women to become pregnant. plus with one of the meds she is on, it causes severe birth defects.
I realize that God is bigger and his plan is whats gonna happen. I understand she may be healed and live a normal life, but I also understand the other side of that.
 But I cant help to think about when do you tell your child they may not live long enough to get married, finish college, be a monster baby doctor...or that she may not be able to carry and give birth to her children. What age is appropriate? My gut feeling, and what I have done so far is let her ask questions and her bring things up. I will answer her questions truthfully. But I dont want her to be a teenager and find these things out and her wonder why we didnt tell her, my gut feeling on this is give her the possiblities, considering the circumstances, as soon as they come up.
It is amazing how my questions get answered for me sometimes. God has said to me on more then one occation, OK Now is the time. Ready or not. lol. I have been ready. So about a month ago Haley started talking about not wanting to have babies like I did. She brought up adoption. She has cousins that were adopted so she has been exposed to that option since she was about 2. She has brought it up a few more times since then. I have not told her though anything about the possiblity of her not being able to carry them and give birth. This was all brought up and decided on her own. I do understand though that she is 5 and that decision may change.
Monday Haley put 2 and 2 together about her situation. She had questions and I answered the best I could. I had to pull the car over, held her in the front seat with me and we talked and cried. I told her we aren't going to worry about it or be sad. We talked about how God has a job for us to do while we are here and once our job is finished he brings us back home. Again we talked about Jesus being right there when you open your eyes, and that I trusted him so much that I know he will take care of her, ashley or daddy when they got there. I told her I didnt want to leave her, ash or nick, but I am not scared to die. We talked about how no matter how we feel here, we will no longer be scared, worried, hurting. I tried to focus on anyone of us going home, and not only on her. We talked about how everyday is some ones last day.
As hard as it is to believe it was a great conversation. I also told her that when ever she starts to think about everything she can and should come talk to me. Holding it all in isnt going to help anybody. She is such a smart kid. I am so thankful for Jesus' comfort and peace. It was without a doubt filling our car that morning!

Yesterday we had our doctor appt. We brought ashley along so she could see the echo. We schedualed one for her in april. Everything went well. We will get a date on the next catheter soon, but we talked about it being the 3rd week of march. The doc is still hopeful we will be able to do surgery this year. As her pressures stand now, surgery is not a safe option. Hopefully we will see amazingly lower pressures in march!
Also back in august they put in a device to plug her PDA.
This is what it looks like. Her PDA was huge, 7mm. They had to use a plug that was 10mm, the center cylinder. The ends are bigger. So one of the ends is sticking out into her aorta and messing up the blood flow a bit. It is not an emergency but it does need to be fixed. We will talk about that when it gets closer.


The doctor said that Haleys heart is pumping surprisingly well. With the PDA device sticking out, it is requiring her left side to pump harder to get the blood passed it. He said her left side has no muscle thickening, which would be from the muscle growing from being worked out.
Once again we got to see the priceless look on some ones face when they hear haleys heart beat for the first time. We had a medical student in the room with us. We are also talking with the doc to see if adding a pulmonologist would be a good idea.

The last resort and only known cure for PH is a double lung transplant. After a transplant a million things could go wrong, it is in no way an easy fix. It is a there is nothing else we can do option. The success and survival rate is really very crappy. That said....
There is a young man that needs your prayers.
Last week Thursday after 14 years and 9 months on the list he received a double lung transplant. It was a very good match and he is very, very slowly improving.
He was diagnosed at age 3 and has had PH for 15 years and the last 18 months he has been on data point check ups meaning, there was nothing more they could do for him as he declined but track his decline in hopes of gathering data for other PH patients.
He is having heart issues now. His heart is having a difficult time adjusting to the new lungs. They actually had to induce a PH pressure of 65 to get his heart to calm down.
Please keep him and his family in your prayers as they are going through this all right now.

If you would like to do something for Haley and our family, please give blood and please keep your lungs (and other organs) healthy and be an organ donor.

Thank you all for your support and prayers!

PS The other day The Doctors are talking about nose bleeds. They are talking about the rare nose bleeds that haley used to have! They said it can be life threatening. Maybe I should send this episoide to the doc that was an idiot with Haley....hahaha