Our Baby Girl

Well I've got some good news and some interesting-not-so-good-depending- on-my-outlook-for-the-day news.

Good news first. We are resurrecting the blog!

Other news takes a bit more to explain.

I want to have the details for our records but if you want to skip along, the bottom line or the diagnosis is bolded. Much had happened since I last wrote this though so I'll get back on with those updates later.

Two days before we moved from San Diego Noah and I were thrilled to meet up together at the OB's office for the 20 week anatomy scan. The scan started and our eyes were glued to the flat screen hanging on the wall.  I don't care how many times I see an ultrasound I will never get over how incredible it is to be able to see those tiny little babies developing their perfect little bodies! Absolutely beautiful! We had been told a couple weeks earlier from the doctor that he's 75% sure that the baby was a girl. But, I thought Lyla was a boy for the longest time so I was not convinced at 75%. Well, that day she left no question about it and we got a 100% confirmation that we do have a little girl in there! We couldn't be more thrilled! The kids too! Especially Lyla!  

Everything was looking great as the technician scanned her from head to toe. Then he came to her heart and zoomed in. As the heart came up I remember my eyebrows involuntarily begin to lower and my eyes started to quint trying to focus on each chamber. I could clearly see three chambers and every now and then I'd notice the fourth one pop up and down. This looked peculiar to me so I asked out loud, "Are there 4 chambers in there?" The technician assured me there were and so I thought to myself "Well, you don't have a trained eye for this so don't let yourself worry." So I didn't.

 Once we finished up in there we waited to talk with the doctor and he said "everything looks great! She is growing right on track. Congratulations on your baby girl." Then he said "Oh, the tech did mention one thing. Her heart seemed to be a bit enlarged but it looks proportionately enlarged so there isn't anything to worry about but you may want to go ahead and check it out just so that you can have a peace of mind."  He didn't know of any doctors in orange county where we were moving to connect us to so we thanked him for his care grabbed our records and went home.    

Hmmmm?! What? 

At that point we didn't really worry about it. Too much was on our minds. After all, we had just heard a strong solid heart beat and she was moving around like every happy and healthy baby does in there. But when we got home I started to visualize the heart that I saw on the sonogram. Her heart. Our baby girl's heart.  I suddenly couldn't erase the images from my mind. Enlarged? Were there four chambers? I wanted some answers so naturally I went...to the internet. :) I saw some images that I thought may have matched the ones in my head and felt that something was not quite right with her right ventricle. After that I hit a wall of confusion and decided to close the computer and just find a dr as soon as we could to check this out for real once we moved. 

Fast forward a few weeks of moving bliss in conjunction with Noah's 1st semester finals, Christmas joy, spectacular visitors, an unforgettable milestone baptism, and I found myself back at a new OB's office waiting and waiting and waiting  and waiting to get called back. Three total hours was I there and no ultra-sound of her heart to prove it. He wanted to see us back in a week to "check out this baby's heart."

So back we went. I was 24 weeks along. It was January 15th. Noah was with me this time (so were Cubby and Bennett- they made things extra exciting!) We were antsy and anxious to get some answers. 

Long story a little less long…we were called back and during the scan, the technician called for the doctor to come in, he looked at the screen, squeezed my left arm and then they prepared a room for us to talk in. We were told that she does have a smaller than normal right ventricle and got referred to a perinatologist. He said- don't worry yet. She'll check things out and if she refers you somewhere else then you'll know there is something to worry about.  

Yikes!

Still so many unanswered questions. The wait continued. The internet search resumed.

I went home and looked for anything to do with a small right ventricle. Or a hypoplastic right heart. But unfortunately, the internet is not a place of comfort in a time like this.   

After meeting with the perinatologist (the next day on Jan 16th) we found out a bit more and left with two possible diagnoses (1. Hypoplastic Right Heart (HRH) or 2. Epstein's anomaly)  and a referral to another specialist. Worry. This time a pediatric cardiologist. But we knew there was something really wrong when the dr there kept casually throwing out words like "major heart defect" and "I don't see the blood able to flow to her lungs" and  "I am not qualified for this type of condition."

The unknown was driving us crazy.

What does this mean?

Will our baby girl make it through this?

If she does will she be ok?

On Jan 17th, we got an appointment to see the pediatric cardiologist. It was the next day but it felt more like an eternity. I called Noah during one of his classes in San Diego to tell him we got an appointment and he left school early to meet me at the doctor's office in the city of Orange. 

I kept watching the door to see Noah walk in.

Then there we were. 

Sitting side by side. 

Waiting to be called back and praying for some answers. 

I was the only pregnant person in the waiting room. I kept thinking, What are we doing here? We shouldn't be here? Noah should be at school. I should be picking our other kids up from school. Is this a dream? 

We got called back and had about a 45 min echocardiogram done with the technician and the cardiologist in there with no insight into what they were seeing. They kept switching who was controlling the wand and the machine. They seemed a bit frustrated.  I kept probing for answers. Anything at all. But they kept saying, "just hold tight. We just need to take a series of pictures and we will explain everything to you."  

We finished up and got put in a room to finally go over everything with the cardiologist.

He wouldn't look at me. Only at Noah. Is he nervous to face the mother?  

He started slowly and in a very concerned tone "we are looking at a very rare, very serious heart defect." He went on and on explaining what that was. He wasn't very optimistic. Is that just his personality? He still wouldn't look at me. Even when I asked most of the questions. Was I just being defensive? I tried not to let that bother me and tried to soak in every word he said making notes of the foreign words and medical terms so we could go home and look further into it. He gave us a firm diagnosis. She has Pulmonary Atresia with an intact ventricular septum (PA/IVS) along with or which is causing Hypoplastic Right Heart Syndrome (HRHS) and a leaky tricuspid valve. There is no way for her blood to get to her lungs and give her body the oxygen she will need to survive after she is born. He mapped out different surgeries she would need throughout her life. One almost immediately after birth. Another one when she is 2-4 months old. Another one when she is 2-3 years old.  Then they would monitor her and go from there. I was scared. My heart ached. I kept looking at Noah thinking how grateful I am that I have him to fight and journey on this journey with. The dr apologized that we had to meet under these circumstances and gave us a card to a surgeon and we went on our way. 

The drive home was sobering. I was following Noah in the car in front of me. I was alone with my thoughts. Tears started flowing. I felt so much.    

The whole week was pretty sobering. I have cried me many rivers but I have also had some incredible spiritual experiences already. God knows us. He is in the details. He loves this little girl probably more than we do (if that's even possible). We don't know what the future holds but we do know that we are incredibly blessed to have this sweet perfect little girl come join our family. She is strong. I can feel it. She has a strong heart. Even though it will need help physically her heart is strong. She'll have a tough battle ahead but I know miracles happen with God's help, great doctors, and a lot of prayers. 

So please pray. 

Pray that Noah and I can have the strength and inspiration we need as we seek out answers to the list of questions we have and to find the right team of doctors to help. And that we can have the strength and wisdom to raise these other 4 healthy children.

Pray for the doctors who will operate and work with this precious baby throughout her life. 

And please pray for this little girl to fight! Fight to fulfill whatever purpose she is being sent here to fulfill. 

We'll be here with further updates.