My Eggs from Sonew arrived!! I HAVE A BABY!!!!!!!!!

[sonew123]

I got my first PIP!!! its a blue EE egg..I can hear it chirping away!!!! yeah....

Your appt sounded really stressful-My brother had open heart surgery to repair his pulmonary atery when he was 3 and again at 33-he's 36 now. Cannot they replace her artery? they used a xenograft on my bro. I pigs artery...

 

[blessedchickenmama7]

OwensMom and Sonew, thanks for caring about our appointment. Here's the long story. It's been public as we have a caring bridge page for her so I don't mind sharing the short version here. My husband is a pastor, so really, nothing we do is very private... Although he left the last church a year ago and is working right now doing something else, we are hoping to be back in the ministry soon after a much needed rest.

My daughter is 5, almost 6. She was adopted from China at 3.5 and diagnosed in China with pulmonary atresia and VSD. When she arrived home we found out she actually has Tetralogy of Fallot (4 heart defects, one name), Pulmonary atresia (5th heart defect), double outlet right ventricle (DORV) (6th heart defect). Her oxygen saturations ran routinely in the 50's and she was, by some miracle, surviving that way. She was always blue, so blue that we could not tell she was also jaundiced. The whites of her eyes were yellow, but because she had way too many red blood cells as her body's way of compensation for oxygen deprivation long term, that was masked by an orange tint to the whites. After her first heart surgery a few weeks after she came home, and many weeks in ICU where she coded 7 times during the weeks after surgery and had multiple systems issues, we began to see her color. At that time the jaundice was attributed to surgery/recovery trauma because she had been near death with her systems shutting down multiple times. When the jaundice continued though, it took a year, but we finally got a diagnosis last summer of Alagille syndrome. That means that she needs a liver transplant now, but can not get one because her heart, so far, is still unrepaired.

She has had two grafts placed however, because pulmonary atresia means she had nothing to work with essentially, she has no valves, etc. Her body had grown collaterals, which is like a "shadow" blood supply to different areas that does not follow the traditional routes and can not be just "shut off' all at once with a new supply because she would not survive the sudden direction changes in blood flow. She must grow some tissue on her own to be able to connect the things they need to and to close the holes in heart. Right now if they were to do that, her pressures inside her heart would literally cause it to explode because there is not enough to carry the blood to connect to her lungs and it would back up. Her right lung had only every gotten a 30% supply and when they increase it even tiniest amounts, it is like she is drowning in her own blood until her lungs learn to open up and process the blood. So her lungs are slowly, over years, having the blood supply increased to them. In the last surgery, in October of 2009, we learned that the bit of pulmonary tissue she has is not growing well. It's necessary for that to happen so they will one day be able to place valves. Those will be synthetic and need to be replaced about every 7 years if we get to that point. But for now, there are three stages to her repair, and after two surgeries, 3 caths, and multiple hospital stays, we haven't finished the first one. The entire processs was supposed to take a year we thought. Its been two and we're still working on the first stage. And we've been told that there is the possibility her body is not going to respond. People with Alagille also have problems with the arteries and veins they do have narrowing over time, so this is complicating things, too. And they also have problems with aneurysms, which she's already had a huge one on her aorta corrected once. Right now, thankfully, as far as we know, she has none.

The visit yesterday was about her liver. The discussion now is whether she will be given a diversion and wear a bag on her side for bile to flow into to relieve some of the symptoms she has that make her miserable. Also, to discuss a liver resection that needs to be done (removing part of her liver) and whether her cardiac status would allow any of those things to be done.

So she's got some serious, systemic things going on. The heart surgeon we have is ranked in the top 10 in the world to deal with Claire's type of defect.

I am glad we didn't know what was really wrong with her totally before we adopted her. Had we known, I would have been too afraid to go through with her adoption. We knew about her heart defects and that they might not be able to be repaired fully but that they could be palliated if nothing else. We took her records to Boston Children's and Duke to have them reviewed before we adopted her. We did not know about the Alagille and all the other problems she has. When she was given to us in China, I instinctively knew and told my agency on the phone that there was way more wrong than a serious heart defect. But at that point, in my heart and my husband's, she was already our daughter and there's no way we would have come back to America without her.

We have another daughter from China, adopted first, but 7 months younger than our daughter with the health issues. She towers over her older sister and outweighs her by 14 lbs. And she's only in the bottom 50% of the growth chart. Our daughter with the heart/liver issues will be six in April. Yesterday she weighed 27 lbs at the doctor. Because of her liver issues she has malabsorption issues and is also going to get a feeding tube if her cardiologist okays it to the liver surgeon.

And on top of all of that, they have found a "spot" on her liver that is concerning. Alagille kids have a higher chance of liver cancer, so this is troubling. That is going to have to be removed as well.

I know this sounds like all gloom and doom, but both of my girls are bright and engaging, though, and they love the chickens we have, as well as the bunnies and dogs. So small as it may seem, these chicks are a huge distraction from all the things that we are dealing with. And we are excited about them.

 

[Karrie13]

Wow. I am not sure what else to say BlessedChickenMama7 other than we will pray for your daughter that the tissue in hear heart starts growing strong so that the rest of her medical issues can be taken care of. Bless you and your husband for taking this little girl and her problems into your hearts and home. She may not have had a chance at happiness and love if you hadn’t.

 

[Karrie13]

Also.. good luck on your hatch. Those are come gorgeous olive eggs! hmm.. makes me wish my bator wasn't full right now. Maybe next month

 

[blessedchickenmama7]

Thank you, Karrie. I am so excited about the olives, too! Maybe we can both fill our bators up again next month!

Sonew, I forgot to say - A pip!!!! I feel like I'm the aunt waiting in the delivery room. This is so exciting. I know you're probably working, but keep us updated as you can!

 

[sonew123]

Quote:
I will and I am at work and will not get to see anything until about 5pm:-( But I will totally keep you guys updated with pictures-I will seperate chicks by egg color so I know what kind hatched out ans see what the differences are

 

[cassey40]

Blesseschickenmama7, I will keep your daughter in my prayer, Hope all go's well with the hatch.

 

[blessedchickenmama7]

Thank you, Cassey! Very sweet of you.

 

[sonew123]

2 babies out and 9 pipping!!!! the blue egg and cochin bantam egg woo-hoo...

 

[OwensMom]

WOW, with all that medical stuff happening, the incubation of eggs is a piece of cake!! I knowthat it is hard to believe now but we are never given more to deal with than we are capcble of dealing with. Your daughters are certainly lucky and blessed to be with you. Keep the chicken hobby going.
Sonew-YOU HAVE BABIES!!!!!
Take care all, Lynn