Friday, August 7, 2009

Heartbreak

(Can you see the baby? He is snuggling, with his arm up by his face.)

This is a difficult post.
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I went in for my followup ultrasound, this time with a perinatologist (baby heart specialist). Getting right to it, my baby has a serious congenital heart defect. One of the chambers of his heart did not grow, will not grow, and is closed off to an essential valve. Right now, because he is in utero, and doesn't need to use his lungs, he is fine. As soon as he is born, however, he won't be able to get oxygen to his lungs, because of that closed off chamber and valve.
There is hope. As soon as he is born, he will go on medication to help oxygenate his blood. Within the first two days, he will have surgery to place a shunt or two in his pulmonary arteries. From there, more surgeries are planned, but it all depends on the growth of his pulmonary arteries, and how his heart re-routes itself.
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Best case scenario: his heart adapts, surgeries throughout his life, he copes and thrives with basically a two chamber heart.
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Worst case scenario: his arteries don't grow. Heart and lung transplants would be the only option. After that, or if that doesn't work, there is nothing more they can do.
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At this point, it is just his heart defect that they know about. Could be added chromosomal abnormalities. Could not be. Although the two are not related. His condition is not genetic. Just something that happens, is not common, but is very severe. For now, I will have routine ultrasounds and be kept on close watch until delivery time. From there, it will be a whirlwind of hospital stays and surgeries. The good news is, the baby is completely healthy, strong, and growing well, besides all of this. The doctors keep commenting on his energy, so that is a good thing. My body is providing everything he needs for now. The danger comes after he is born.
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This changes a bit of our plans. Not sure yet if we will continue with the house hunting. The first thing the cardiologists asked me, was if I had family in town. I told him I didn't, but I had friends that made up the difference. We would appreciate every one's prayers during this time. Thank you.

37 comments:

Colleen said...

I'm here for you Shaina, we're all here for you. Whatever you need. Prayers abundant, meals, babysitting, you name it...even hugs and kleenex.

Trinette McCrary said...

Love you and your family. Priesthood Blessing for you and Heath-just a thought. I hope you can find some peace and comfort during this difficult time and the months to come. In our prayers.

Sharon said...

we're here for you! i saw his face and i think he looks like Kolby, is it too early to say? baby K is in our prayers, we're thankful he's coming to join the family!

I'm Always Rite said...

Love you all so much! You are all in our prayers!

dippyrooroo said...

Love and prayers from the Sagens. Truely our hearts are with you.

Erica Hettwer said...

Oh, hugs!! I'll be praying for you and your little one!

The Frosts said...

Oh Shaina, I am so sorry. That is heartbreaking. Our thoughts and prayers are with you, your family and your sweet little baby. Big, big hugs!

Candace said...

I wonder if you could go ahead and get on the wait list for the Ronald McDonald house. That would be a huge help in the beginning.

Ariane said...

My thoughts and prayers are with you and your family. The baby looks so precious in the picture. I will pray that he grows strong once he is born and that the doctors are able to help him.

MeLissa said...

Sorry to hear this. You guys will be in our prayers too. We love you!

ModernMom said...

More prayers and hugs from bloggy land.

Megan said...

my heart sank when I read this news. . . I'm sure it was so hard to write. But immediately I thought of an old friend (Sariah) who I really haven't spoken to in years but came across her blog a while back- her son has (I think) a similar condition. She lives in WA but went to Stanford to have her baby and surgeries. He is probably 9 mo or more now. Her blog address is: www.finchouse.blogspot.com
Her blog and what she's gone through might be able to help you guys in your situation. We'll keep you in our thoughts & prayers.

Naomi said...

Such sad news. I truly am sorry to hear this. I will be praying for your beautiful baby and your family too.

Lola....L..O..L..A....lo--oh--luh! said...

Shaina, I am so sorry! We'll send our prayers, hope, and faith for the best your way.

TheTennesseeWilliams said...

I am so sorry Shaina, You guys will definately be in our hearts and prayers!!

felicia said...

You and your family will be in our prayers!!! Love the 3d pic of your little man!

Jenni said...

Oh Shaina, you and your little guy are in my prayers...he's a cutie in his picture!! HUGS!!

Nancy said...

You guys are in our prayers!

Holmes Home said...

You're in our prayers as well! Take care of yourself and that beautiful baby - love ya!

Cr4zySAHMandArmywife said...

My prayers too are with you and your family.

Dan and Katie said...

Wow, Shaina, I am so sorry to hear the news. Dan and I are happy to help with anything we can. You will definitely be in our prayers. You guys are such an awesome family!

Mags said...

Hey Shaina,
I read this to my husband. Some friends of ours, their last baby had something that really sounds like this. The first like 3 years were super stressful with surgeries and such. However that boy is almost 12 now. So there is hope. We will be praying for you.

Jen Sue Wild said...

Shaina,
This took me back 4 years ago.. I pray that all will be well with your little guy.. Know there's a special angel watching over you..
If you need some one to talk too cry with ect. you know my #..
I will be praying for you and your family..
Love you..

The Girls' Mom said...

I will come if you need something. You are all in our hearts.

kendra said...

I'll be praying from here. I wish I was there to help. It's amazing the medical technology we have now. I'm sure he will be in great hands when he's born. You just keep up the good work keeping him safe until then. My and Cameron's prayers are with your family.

sarasophia said...

I am so very very sorry you are having to go through this.

I will diligently pray for you and your sweet baby.

<3 sarasophia

teensy_dc said...

You are in my thoughts for sure!
HUGS!!
D.C.~

Shavonne said...

I'm here for you sister!

Domestic Goddess said...

Shaina, I am so sorry to hear about this. You and the baby will be in our thoughts and prayers. Isn't it wonderful that we have the priesthood, modern medicine, and a loving Father in Heaven to rely on at times like this!

Elise said...

Oh, Shaina!! I'm so sorry that you have to go through all this. I will definitely pray that all will be okay and that you and your little boy will be watched over. Modern medicine coupled with the Gospel can do wonderous things. I can still remember everyone in our ward praying and fasting for Matt and what a great blessing that was for us. As part of that ward family, THANK YOU!!

If you ever need someone to talk to about the NICU and what to expect, please give me a call or send me an email. I know that the NICU and such seems very scary. Lean on us your friends. Love you!!

Nicki said...

I was so sorry to read this on your post--I'm sure it was a shock to all of you. We are praying for you and sending lots of love your way.

Adri said...

Oh, Shaina! I'm so, so sorry to hear this news. Your family will definitely be in our prayers.

I had many nurses and doctors ask me, when I was getting ready to take my 10-week-old baby out of the NICU, if I had family in town. When I said that I didn't, they all seemed so concerned. But, non of them were LDS, so they just didn't understand that I had a substitute family. We are here for you. Whatever you need. Please let us help if we can.

runningfan said...

Oh no! Add my faith and prayers to your list. You have my deepest sympathies, but we'll all help you get through this.

Terri said...

I have been a lurker for some time now, but reading this post and in my last month of pregnancy i about burst into tears for you. You are all in my thoughts for sure. I just can not even imagine. I am so very sorry.

Maynards said...

I know there is not much anyone can do at this point, but I hope you get some sort of comfort (as I did) in knowing that you are surrounded by so many that will cry with you, pray with you, feel with you, and be with you. My heart breaks as I read this post, but I also know that you and your baby are in God's hands, and only the best things will happen, even if it may mean some heartache and pain. I am hurting for you and crying with you. You are loved.
p.s. I just spent the whole weekend with my cousin who is having a baby in one month. Her baby is missing 1/2 of his heart. I told her about you and she is also praying for you. She said if you want to, you can call her.

Chloe said...

Oh Shaina, I'm in shock. Please know that you and your baby will be in our prayers. You have some friends on here who have been down this difficult road before and can be a source of comfort and wisdom - lean on them. You are a strong woman. You and your family are loved. Get a blessing for you and Heath and ask for help. Love to you :)

Katy said...

I just found out about your cook book and uncoming baby from my friend Heidi Bartle. I just wanted to let you know that another one of my friends Marty Evans had a baby with the same Heart defect. Their little Katie just turned 3 and is doing remarkably well. http://evansfamoffive.blogspot.com/2009/04/katie-is-3.html
Good luck these next few months. I know the Lord will guide you as you move forward.