FISH results.

We got the preliminary amnio (FISH) results back, and they're negative for Down's Syndrome and the other trisomy defects we were concerned about. These results are 98% accurate. We will have the full results back in about a week. I feel like 98% of a weight's been lifted off our shoulders and there's still something else they're looking into that we dont know much about but our odds are good of it just being his HLHS!!!

BUT HELLO, yay! 98% certain there's no trisomy 21, 18 or 13!

Whew. Now we can focus on his heart.

Oh, and little Eli is definitely 100% a boy! They checked his chromosomes for that too :)

I'm officially outnumbered.

another concern.

I got to go for an amnio this week. Should that turn up Down's Syndrome or Trisomy disorders, the baby will not be equipped to survive after birth, let alone survive the surgeries. We're still trying to deal with that possibility. If that's the case, we have the option to terminate the pregnancy or carry full term and let baby Eli pass in the comfort of our home. No medical care given.

If it comes back fine, then the rest of the pregnancy should be okay. It's once he's born that we start facing the real heart problems.

Positive energy leads to positive things.

We are waiting on the results from the Amnio-FISH test. These results are 98% accurate; we'll have the FISH results back on Wednesdasy and the full genetic makeup in 7-10 days.

I wish I had the words to even begin to express how grateful and touched and supported and loved we feel. Your emails and comments constantly remind that we're not alone in this. We're blessed with amazing family and friends, and I'm amazed at how incredible each of you, who took time to email or write or comment or think of us, are as well. Thank you doesn't seem to be enough. Please forgive me, though, if I don't get back to you for a while.

<3

One of many.

I emailed this woman to get an insight on her journey with HLHS. She's got some empowering words and not even have met her, I can feel her strength that one day I hope I have even the slightest amount she progresses.

Kelcie,

Thank you for emailing, that is exactly what I hoped my blog would encourage. To get straight to the point- there isn't ONE day that goes by that I am not thankful for having Jack and doing the surgeries. In my view (and I'm not a crazy pro-life person or anything) but in this case- they have a really good chance of living fulfilling lives. They should at least be givin a shot.

Particularly now- even in the past 7 years they've made GREAT strides with HLHS and the surgeries involved. And it's only around the corner that stem cell research will provide them with their own hearts if need be. After the stages of surgery it's years and years before we need to worry about transplants and such. Right now it's as if we have a perfect, healthy little boy. He know's all about his heart and knows how lucky he is. He enjoys life by the minute and having that example in my life is incredible. His energy is through the roof- it scares me to think what he'd be like with ALL 4 chambers!

Obviously- this journey is hard. It wasn't fun sending him off into the OR and knowing he was on by-pass and watching him lay in the hospital all those times so uncomfortable. But he doesn't remember any of it. I almost get sad that he doesn't because it made him so strong and it's responsible for his incredible character. WE remember. We will never forget, and YES it is horrible to go through, but if you looked at your two-year old, I know you would do anything for him and that is exactly how you will feel with your new one. People hear our story and ask all the time "how did you do it!?" and it's just like anything else for your children (ie: LABOR...) you would do it again for them if you had to.

I'm glad you found me on the internet- but I do have advice to not BELIEVE everything you read or take it all into account because there are so many different cases in HLHS. Each little human is different and each doctor is different so don't parallel yourself or your son with others. You will get to know him and his needs and his abilities and you will be able to help him along.

I can't sit here and say "everything is going to be fine"- but I CAN tell you that whatever choice you make will be worth it, and will be right. You are the mom, you know what is best. These kids truly are incredible and strong, and resilient. I am inspired every day. Jack is our only right now, and we have been trying for almost 5 years for another. I sometimes find myself saying "I'll even take another HLHS baby... if I can just have one more.."

We are blessed to be mother's of these amazing heart babies, and REALLY- the medical field is staying ahead of us. 15 years ago they couldn't even identify HLHS in utero, the babies would go home and it was too late. We are so lucky to have such advances and research and equipment. I really believe your baby has a great chance of survival in a time like this.

I wish you all the best- I hope I've comforted you and not freaked you out! :) Take care, keep calm.. and stay in touch.

~Lisa

Half a heart.

As We left the hospital We couldn't help but start thinking how life would be after July. We were told that for this child's first 6 weeks of life, We would be at children's hospital day and night. Spending maternity leave on a cot in the nicu. Spending lunches visiting our baby until strong enough to go home w chest tubes and big bottles of medicine. Only to return in 3 months for another surgery, given baby makes it out of the first.

Am I strong enough of a mom, woman to be able to do this?!

Questions have piled through our brain. We cannot answer many of them as no one can for Us. We just don't know what's going to happen. We have an insight but no real way of knowing if this baby will even make it out of surgery ok, back to the 2nd surgery or live to be a certain age.

We do know baby has HLHS. AKA half a heart. Baby will need 3 surgeries. Today showed that in fact baby does not have the left side of the heart working. The right side is doing all the work and will need to be reconstructed after birth and 2 surgeries follow.

Three options were given to us. Each one playing a role in our head and trying to decide which is best for me as a mother, and our family. We can't make a decision today but it's on limited time. I think having the support and love We do have, has helped us be strong enough through this process so far that I know We are able to make the right choice.

Please continue to pray for our family. God bless. ❤🙏

Diagnosis.

So after many ultrasounds and doctor appointments, our unborn baby has been diagnosed with HLHS.

Hypo-plastic Left Heart Syndrome.

Background:
Hypo-plastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. In a child with Hypo-plastic Left Heart Syndrome, all of the structures on the left side of the heart are severely underdeveloped. The right ventricle must then do a "double duty" of pumping blood both to the lungs and out to the body.

Treatment:
There are essentially three treatment options that have been proposed for children with Hypoplastic Left Heart Syndrome.
-No treatment at all and baby passes at home with no care of this defect.
-Cardiac transplantation.
-The most commonly pursued treatment for Hypoplastic Left Heart Syndrome is "staged reconstruction" in which a series of operations, usually three, are performed.

We ask that you continue to pray for our family as we prepare for the challenging times ahead. ❤

Update on baby.

I had an ultrasound last Monday for half way check up. Friday is when I had the visit with the doctor. That’s when he goes over everything from the ultrasound. Things started off well. Then I got the BUT…apparently (even though I had background in maternal care) I did not know this part. Babies have 2 vessels in their umbilical cords which are a viable support system to baby from me. Baby gets lots of their nutrients and supplements through these vessels. Based on what I eat and what not. Baby only has one of the two vessels. So baby will be lacking in an area. What area, is what we don’t know. The first place is the heart. So I have to be sent to get another ultrasound this Friday and an echocardiogram on babies heart in 3 weeks. They want baby to be more developed so they can get a better view of the heart to see if its developing well and what not. If things look ok then we have to do more testing elsewhere to see where baby would be lacking. Blood supply, brain function, ect.

Its gonna be a long 20 weeks with all this testing. I am now a high risk patient which puts me basically at the doctor every week now. Not something I want to do but given the situation, its whats best. So yea…that’s that.

Thanks everyone for your thoughts and prayers. We appreciate all your kind words.

Just a thought.

"Until you acknowledge the brokenness in your own heart and turn to the One who is ready and willing to help you, your relationships will remain broken."

It's worth a shot.

Ok, Jesus. Take the wheel.