It's been an emotional week.
I have stopped feeling sorry for myself, but for that first day, I kept thinking there is no way this is really happening.
I felt like any minute someone was gonna wake me up and I would realize it was just a bad dream.
It's one of those experiences that happens to everybody else.
Tuesday.
April 23rd.
My sweet husbands birthday.
We had an appointment to see a specialist at Maternal and Fetal Medicine.
The reason for this was because at 20 weeks, everything on my son looked perfectly fine except they couldn't get a good enough view of the heart and stomach.
"Everything's probably fine but come back at 28 weeks."
At 28 weeks, no stomach and they couldn't get a good view of the heart.
But she also took another 12 mins just to find the gender again, so Jon wasn't worried, and I tried not to worry too much about it.
Or maybe I'm just naive.
I did call the nurse a little worried, and the nurse said,
"Oh everything is probably fine we'll send you over to a specialist just to make sure."
Tuesday, April 23rd.
We sat in the waiting room, I quizzed Jon to help him study for his last final.
The final was Chronic Disease Prevention, a class I was in also, and I had taken the final already.
I teased him about how he was over studying.
I had gotten an A on it, I knew he could no problem.
Finally my name was called.
Deep down I was a little nervous, but Jon kept reassuring me it would all be OK.
"He's our son Madds, he's a champ. What could possibly go wrong?"
I agreed.
We walked into the dark room. I laid on the all too familiar chair.
I didn't like that we had to be there, but I was happy I got to
see my baby on the screen again.
The nurse doing the ultrasound explained she was only there to take all the measurements, then the doctor would come in, explain what she found, and answer all the questions we had.
Should there be that many questions? I got worried
She started the ultrasound.
I love seeing him up there.
After a few mins the nurse said "Wow he does not want to stay still.. "
I smiled at Jon. She had no idea.. This happened at the three other ultrasounds too.
He's a little squirmer.
Finally he stayed still just long enough for her to get some good shots.
She showed us what he looked like 4d.
He looked flawless up there.
"Yep I was right, he has your nose." Jon whispered to me.
I smiled. He did have my nose.
She spent a few more mins taking pictures.
It was taking longer then I thought, and I forgot I should hold my questions for the doctor.
So I asked one of the million I had running through my mind at that point,
"Do you see the stomach?"
"I'm gonna have the doctor answer all of that when she comes in. "
Oh no.
That was when the tears started to come.
It was only the beginning.
As the nurse was getting ready to leave, she made eye contact with me, and I saw the sympathy in her eyes.
There was nothing she could do to help though.
She left the room and I immediately brought my hands to my face, I had to stop crying before the doctor came in.
Jon said softly, "Madds we don't know anything yet, it might not be that bad, everything's gonna work out, it has to."
I nodded. I wiped the tears and took a deep breath.
We don't know anything yet.
After what seemed like an eternity, Dr. Helen Feltovich entered the room.
She had long legs and hair that went past her shoulders.
I had no idea the role she would play in my life at this point.
"How are you two doing today?"
You could hear in her voice she genuinely cared, you don't find that in a lot of people.
"We're ok just want to know what's going on."
"Well let me ask you two first, what do you think is going on in this little guy?"
Hearing the words 'little guy' made me want to start crying again. I held back.
Jon spoke, "Well, the fact that we can't see a stomach is cause for concern. And I know when I look at the heart the left ventricle looks smaller then the right one."
I looked at him, that was the first detail I heard about my son's heart, and it came from my husband.
I thought we didn't know anything yet.. was what went through my mind.
He just grabbed my hand, I understood that it would've done no good for him to tell me that.
"What do you feel deep down Maddie?"
I was surprised to hear my name, she hadn't asked, and the name on my records was Madeline.
"I can feel that somethings wrong and I need to know what it is."
"Maddie, I need you to look at me."
"What I'm about to tell you, there was nothing you could have done to cause it. Do you understand that? You are not to blame, this is a thing of nature."
I wanted to believe her.
Finally, she began.
"You are both correct. The truth is, and this is going to be hard to hear, are you ready?"
Say it.
"Your son has a serious heart defect. He also has what I think may be Esophageal Atrasia. This is where his esophagus is not connected to his stomach. Our ultrasounds indicate that there is an abnormal amount of fluid around his face meaning he is unable to swallow it. Because he can't swallow it, the stomach isn't showing up on the ultrasound."
I stared straight ahead as she continued.
"That can be a quick fix through surgery, however the fact that he has a heart defect along with it makes this much more serious."
My son has a heart defect.
I stared straight ahead and let the tears flow freely.
She went on to explain that it could be a chromosomal disorder, Jon spoke to her mostly at this point. She knew he was pre med so she could explain it in much more complex terms. He understood it better then I did.
She asked if there was any history of this in either of our families,
"No neither of ours," I managed to say, "I've never even heard of this."
"Well the chances that it has anything to do with either of your genes is less then 1%. Jon in Medical school you'll hear the saying "When you hear hooves, think horses not zebras." We could jump to the conclusion that this is a genetic disorder and even go so far as to say it is down syndrome or another chromosomal disorder. But the truth is, that's most likely not the case."
My son has a heart defect.. But he's moving around all the time.. I don't understand..
She went on to explain some genetic testing that could be done so we could get to the root of what caused it, even though if she had to bet she'd say it was just a random defect that rarely occurs when babies are developing.
I was one of the rare ones that got pregnant on birth control. Now there was a rare defect..
"Now what I'm going to tell you is going to be really hard to hear, are you ready?
No.
"This is something that will require pretty extensive surgery. To the point that many parents choose not to do surgery because of the quality of life that comes with it. You may choose to go through with surgery after surgery, each of which have very high risk of death. And after the surgeries he'll have many complications for his short life span."
Short life span?
"What I'm telling you two, is that when your son is born, you are going to have to play God. Do you want to go through with all the surgery and lead him down a path of pain, and high risk?"
"Or after he's born, do you want to say, take him off the machines, let me hold him for the few moments he has left?"
I looked up at the ceiling, the tears wouldn't stop coming.
Give me strength. Please.
"What I'm saying is that, you won't have much time with your son."
He has my nose. I feel him move all the time. I don't even know what it's like to hold him. Now you're telling me I won't be able to for very long?
I stared straight ahead, convinced at any moment I was gonna wake up and realize it was all a dream.
She went on to explain that she was going to have me go to a cardiologist, who could clarify that the heart was indeed as bad as she thought it was.
"I can assure you, you won't be alone in this process, you will have lots of support from many specialists."
I don't want your support. I want my baby.
I looked at Jon who was crying at this point.
I've only seen him cry once in my life. I wished I could take away his pain.
It made me cry more.
"What questions do you have for me?" She asked.
Questions. I had a million but they all seemed to not matter now.
I spoke.
"Let me clarify. No matter what, even in the best case scenario my son will have complications for the rest of his life?"
"That is correct."
I just nodded as I wiped my tears. I understood. Well, no I actually didn't at all. But I was trying to.
I don't remember how the end of the appointment went.
I remember her hugging me, telling us to just leave the hospital, take the day off, and go home so we could process everything she just told us.
Basically so we could go home and cry.
Before I left she put one of her hands on my shoulder and said,
"Promise me you will not forget, you are not to blame."
Then she assured us she would get the next available appointment with the cardiologist.
We left.
The walk out of the hospital seemed to go on for miles.
When we got to the car, the first thing Jon said through his tears was,
"You don't deserve this...You don't deserve this."
I was thinking the same thing about him.
Fast forward to the next day.
I was at work, and started researching everything I could, trying to remember every detail she gave me yesterday.
Dr. Feltovich had said she would get me the next appointment with a cardiologist, so I was supposed to hear from her any minute.
Finally, her secretary called me.
She explained the cardiologist was booked for over a week.
Are you kidding me. I thought.
No answers for over a week.
She told me she was working on it and would try to find me a sooner time.
2 hours later she called back.
Dr. Feltovich had pulled some strings, we were going to be seen at 9 AM the next morning at Primary Children's.
I thanked her, and immediately called the BYU health office so we could get things covered through our insuarnce.
They were going to be covered.
2 small miracles I needed badly.
Jon and I slept at his house in Sandy that night so we could beat morning traffic to Salt Lake.
There was a little lighter feeling in the ultrasound with the cardiologist.
Mostly because we had gone through hell 2 days before so everything from that point forward could only get better.
I think the baby was just sick of ultrasounds at that point!
Because when the doctor had the perfect shot at his heart, he all of a sudden flashed his bum right in her face!
"Did you see that!!! He just put his butt in my face!"
Haha we were all laughing so hard!
He really was just so sick of it.
He has been breech for a few weeks, and was breech when she started this ultrasound.
But towards the end she had another good view and he suddenly flipped completely over and his little body went right off the screen!
"What, where'd he go!?" She laughed.
He's smart. When she found him again he had made sure to put his back to her, almost as if he knew it would make it more difficult...
"At least he's not Breech anymore Madds!" Jon said.
I was glad, I liked feeling him kick up toward my stomach instead of on my cervix..
It took the cardiologist 45 mins, but finally she took us in a room to give us details.
As we sat down, I saw a box of tissues on the table and was reminded of the appointment just 2 days before.
I worried we'd leave feeling the same way.
We didn't.
There is hope.
She explained everything.
Basically there is a condition called Hypoplastic Left Heart Syndrome.
It's a rare congenital heart defect where the left ventricle does not exist.
My son does not have that, yet.
He has both of his ventricles, but the left one is a lot smaller then the right.
However, his heart still has time to continue to grow.
It all depends on which way it grows.
If it grows the bad way, it will close the left ventricle and he will end up with only one ventricle.
This is where there would be multiple intense surgeries required, including needing a heart transplant eventually, and in her words, "The chance of him out living you two is close to nothing."
She said, "I'm going to take the extreme and say that is what's going to happen."
Of course you are.
"I hope I'm not right, and if I'm not then here's the other option.."
She went on to say that basically if his heart grows in a way that continues to open his left ventricle,
if his heart grows the good way,
he could be fine.
He will require a small surgery after he's born that will keep him in the hospital for a week, and then another one when he is 3 years old. But then he can live a normal life.
I asked what activities he would be restricted from if it grew the good way.
She said basically none, he could play competitive sports he'd just have to do check ups with a doctor every year.
I asked about the stomach surgery he'd have to receive (where they connect the esophagus to the stomach), if that would make him at higher risk.
She explained that it does make it complicated and that a stomach surgery on top of a heart one all within his first week of being born would put him at higher risk.
But if his heart is growing right, there's a good chance he'll be fine.
That was if his heart grows the right way.
I have an appointment with her again 4 weeks from now. This is so that she can get a better feel for which way the heart is going, but they really can't know for sure until he is actually born.
When we left, we weren't totally convinced he'd be ok, but we felt a lot better then after we left the specialists office on Tuesday.
It is hard to not know if you will bring your baby home with you after the hospital.
But after we left the cardiologists office, we both decided we could only benefit the most by believing his heart would heal.
I know the Lord is capable of healing my son. I also know if that's not in His plan, he'll give Jon and I the understanding and strength needed to cope.
Since these appointments, life has gotten happy again.
We appreciate all the love and support that have been shown, as it is much needed at this time.
We also got all moved into our new place, and we absolutely love it!
Baby continues to kick like crazy.
At least I know I get to meet him:)
We are fasting and praying with all our hearts that his heart will heal, we need a miracle!
We'd like to ask all our family and friends if they would be willing to keep him in their prayers.
I saw this video today.
I know with all my heart that the Lord has a plan for each of us. As we seek His will, our faith will grow and He will make more out of us then we ever could ourselves.
We'd like to ask all our family and friends if they would be willing to keep him in their prayers.
I saw this video today.