Thursday, September 17, 2009

The Details

Yesterday, I had a "routine" ultrasound with my high risk doctor (who I see because of the MTHFR blood clotting issue). I was expecting a quick ultrasound, like usual, and hoping for him to declare that the baby was ready to be born! I mean, he's an ounce shy of nine pounds, after all.

But then he looked at my baby's heart for a really long time. And then he went back and looked at previous pictures of my baby's heart. And then he started to use really big words, but all I heard was dilated, fluid, problem, cardiologist. He hoped he was wrong and that Baby Sam was just lying in a funny position and we'd get a better look with an echo cardiogram.

We are so thankful that we got in today, the very next day, for the echo cardiogram that takes a week or more to schedule.

After an hour and a half of a cardiologist looking at every tiny part of Sam's heart, she left the room with her poker face intact, to run her calculations.

Surely this is a false alarm. Surely Dr. Fancy was wrong. Surely Baby Sam is the picture of health.

And then the cardiologist returned and said, "We are certain of our diagnosis. We got good pictures. Let's look at this diagram of a normal heart."

Room spinning. Walls caving in. Tears blurring my eyes. A normal heart? What does that mean Baby Sam has??

From our understanding, there are potentially three little problems. The first is a definite -- it's called Coarctation of the Aorta. What this means is that there is a little kink in Sam's aorta. This affects the blood flow out to his body after birth. Right now in utero, there is a little (normal) valve that God put there that is open that is helping to supply blood around the kink. After he's born, the valve normally closes, around a week after being born. The doctors will put him on prolactin when he's born to keep the valve open while he waits for surgery. If we didn't find out about this now, he'd be born and probably be fine for a few days, until the valve starts to close (like it should) but he'd be left with the kink in his aorta and not enough blood flow. This can be fixed with surgery.

The second problem, not totally confirmed until he's here and can have his own tests not through mama, is Aortic Arch Hypoplasia. This is a narrowing of the aorta, before the kink, that may have to be fixed with a more complicated surgery.

And the third problem is possible Aortic Valve Stenosis, again we aren't sure til he's here. This means that the main valve from his left ventricle out to his aorta is not closing 100%. This can be repaired using a catheter, through his femoral artery to fix this.

Because of these issues, he has visible symptoms in his heart due to extra "down stream" pressure, causing his right ventricle and atrium to be swollen. Which is what alerted us to these problem(s) in the first place. These symptoms should clear up once the issues are fixed.

As soon as Sam is born, they will do another echo cardiogram on him, which will be much better since he won't be in utero anymore. We'll know so much more then.

I can't even begin to describe the feelings of today. And yesterday. But to sit in a room with a cardiologist, who just spent HOURS pouring over every detail of my child and have her say things like -- NICU, intubated, surgery, and he "should" be okay. Oh my.

She said I need to stop taking my baby aspirin NOW (as compared to Sunday, which was the plan all along) because it can cause more constriction to his already limited aorta. She says this is not happening yet, but she wants to be safe. She says he is in no distress and is completely unaware that he has anything wrong in his little heart.

Right now, he's kicking just like normal. We love him so much. And it all feels like a bad dream. Like we'll wake up in the morning, shout "13 days til Baby Sam!" and go to Target for more baby PJs. I believe that God can heal our baby. I believe that he is in good hands. And I am so thankful to know now.

If we didn't find this out, not only would he find himself in distress once he stopped getting enough blood flow, but then they'd have to rush him to the children's hospital while I lay helplessly in my hospital bed, post c-section, miles away. But now, we can deliver and he can be wheeled to the attached children's hospital for his care, while I recover a few hallways away.

It doesn't even matter anymore. All I want is Sam. But I have bags packed. Cute onesies and embroidered hats. Soothing music and big sister presents. I had been dreaming of the moment when they'd hand him to me for the first time. And Emma would come in a kiss her baby brother. And we'd all just hang out all day long in our hospital room loving on each other. Now all I want is Sam.

I know God is in control. I've also learned by now that God's plans aren't always our plans. My desperate plea to my God in heaven is, "Please let him live." My biggest fear has always been something happening to a full-term baby -- when if the baby had just been born, he'd have been okay. And now my full-term (on Monday) baby has very real heart defect(s). And I'm so scared. Right now I am more scared about the next two weeks. I know he needs to be a strong as possible, but I just want him to be born so he can start getting the help he needs.

Please pray for our little family. Pass this blog link along to anyone and everyone. God hears our prayers. Pray that God will keep our baby Sam safe and that he'll be born healthy and strong so he can face the weeks that are ahead of him.

1 John 5:14-15
"This is the confidence which we have before Him, that, if we ask anything according to His will, He hears us. And if we know that He hears us in whatever we ask, we know that we have the requests which we have asked from him."

28 comments:

  1. On my knees right now, my friend. Praying for you, Trav, Emma, and precious Baby Sam.

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  2. Erica,
    You are so on my heart right now. I'll be praying for peace for you and Travis and health and safety for baby Sam in the next several weeks. I'm praying that once he gets here that everything will be much better than expected! Let us know if we can do anything else!

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  3. Erica & Travis, please know that we are praying hard for your family, for baby Sam. I'm going to pass on the link. Praying, praying, praying.

    God's in control. Much love.

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  4. I'm at a loss for words thinking about how you and Travis must be feeling right now. You have so many people praying for sweet Sam and we will continue to pray for you!

    - Molly

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  5. Erica,
    All I can say right now, friend, is I'm praying for you and your sweet family! Praying for baby Sam to remain healthy and strong, for God's protection and quick healing/recovery from whatever the doctors need to do to help him after he's born. Baby Sam is in the Lord's hands and that is the best place for him to be....but it's also the hardest place for us as moms to leave our kids sometimes because we always want to know now what the outcome will be. What a blessing Sam is for your family! I pray that he will grow up to be a light for the Lord, and even now, that his life would be for the glory of God so that those around him may know the love of Christ. Love you!!

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  6. Erica & family -
    I know the pain and fear you are experiencing all too well - except our problem didn't get detected early. I have asked that my little Mackenzie watch over Sam and keep him safe. She is my angel and I am lending her to Sam and your family. You will have so many prayers for you guys in the next 2 weeks. Much love - Liz

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  7. "now, to Him who is able to do abundantly, exceedingly above all we ask or think, according to His power at work within us, to Him be the glory" eph 3:20

    "He Who began a good work in you, is faithful to complete it" phil 1:6

    erica, you and travis have such an awesome faith in our awesome God......He will carry you both, and Sam, through this....please remember that you have "extended family" (us) that can walk with you through it all.... please do not hesitate to call on us for anything!!......yes, God is in control and we are praying for a healthy and safe delivery and a completely healthy Sam!!..........we are all waiting for Sam to get here and can't wait to see his sweet face.....we are praying!!!

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  8. Continuing to pray pray pray! For healing and for life and peace. I will post on my blog today and send the link around... Please let us know if there's anything we can do! Know that we are praying!!!

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  9. Guys,

    We will be praying for you and for Sam...for his healing. Your faith in The Lord through this is really encouraging. I hope that we can be bit of encouragement for you as you go through this. We love you all.

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  10. Erica, Bethany (my cousin-in-marriage via my cousin Paul) posted this link on Facebook so here I am reading your story and praying my heart out for your precious baby Sam. Looking forward to hearing good news of answered prayer! Many blessings of peace while you wait and healing for Sam.

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  11. Erica,
    I will be praying for you and following your journey as your precious Sam comes into the world and is going to need medical care.
    It's so scary to go through this, but God will give you the strength. He CHOSE you to be Sam's mommy, and what an honor!
    I have a son named Milo who was born May 1. We didn't know it but he had a very severe heart defect and had open heart surgery on May 4 and again on May 13. We brought him home in July (would have been earlier except he has feeding problems) and he is thriving, giggling, and all of the good things babies should do. It's amazing how they can recover from all of this. I hope that Sam will do great (by the way, it's good that he's a good size, Milo had a tough time because he was small).
    May God carry your family though this,
    Jamie

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  12. Hi Erica, my friend Carly O'Quinn forwarded your blog to me. I will certainly be praying for you and your little Sam (I have a Sam too). My youngest son, Luke, was diagnosed with SVT in utero at my 20 week ultrasound and later on (36 week Echo), they were worried about a Coarctation as well. Lots of details, too many to get into on a comment, BUT, as we speak, my 20 month old is throwing a fit on the floor. He was born (via c-section) perfectly fine. No NICU even! He had an Echo when he was 5 days old (after the Ductus closed) to reveal a PERFECT, NORMAL heart! The LORD completely healed our little boy. So, as someone who knows the feelings you are feeling (even had 2 miscarriages before this pregnancy), I will be lifting you up in prayer and praying that the Lord will heal little Sam's precious heart and that his life will be a constant reminder of God's faithfulness and GOODNESS. He is GOOD. ldwatson24@comcast.net if you'd like to email me.

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  13. Prayers for you all and Baby Sam. (P.S. I used be Melissa Lockard and was in Dan's class). Your blogging is such a beautiful expression of your amazing FAITH.

    "Do not be discouraged for the Lord, your God, will be with you wherever you go." Joshua 1:9

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  14. Erica,
    I am amazed at the love and prayers you have received and will continue to receive. Know that I am praying for you and keeping your family in my mind. Thank you for sharing Baby Sam's journey with us and know that the sincerity and love in everyone's prayers will make sure that you have your sweet baby boy healthy, happy and in your arms soon. I think it's all a blessing in disguise because if you had not had your "MTHFR blood clotting issue" maybe Baby Sam would not have been diagnosed and then you would not be able to prepare for this situation. I cannot imagine what you are going through, but it is inspiring to see the strength and faith you are holding on to. Just continue to stay as calm as you can so that Baby Sam can finish growing and be born big and ready to get healthy! Keeping your whole family in my prayers. God will see you and your whole family through this.

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  15. Erica,
    I met you at Paul and Bethany's house several New Year's ago. I have been following your blog and wanted to let you know I am praying for you all.

    Cynda

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  16. I am soooooo sorry to hear this news! My niece was born with a heart defect called VSD. Ventricular Septal Defect. They found it when she was a few weeks old. She is now going to be 2 years old November. She has had so many tests and has been living on special medications her whole life so far hoping that they will work and the hole will heal on it's own. The only option if not is open heart surgery. Which leave's any parent, relative or even friend in tears just thinking about it. Fortunately at her last visit with the cardiologist her condition is improving!!!! She was even able to stop taking some of her meds. (the side effects are not the best)
    Now she may not ever have to have the surgery. It will still be a long time before it completely closes but things are looking good. We are so happy her dr. decided to wait on surgery. When she was about 8 months old he took her case to the board to discuss with fellow heart surgeons if she should have the surgery or wait. They all decided to wait. And I am glad they did.
    You and your family will of course be in my thoughts and prayers. I am glad they caught this early and hope that everything works out for the best.♥

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  17. Hi Erica,
    I've read your blog for awhile since I too have MTHFR and suffered loss...I am now 18 weeks pregnant (its a boy!) and I have looked to your blog for comfort and inspiration, as your faith has been unwaivering. Sometimes we wonder why something happens...why were you born with MTHFR? Why did you suffer through miscarriage? And now you have an answer...without your loss, without a diagnosis of MTHFR, without the need for frequent perinatalogist appt's...you would have no idea about Sam's precious heart. Your family will be in my prayers! As will the staff at the hospital...

    Emily

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  18. Erica,

    I am praying for you, baby Sam and your family. Praying that the Lord will heal your sweet baby's heart!! I found your blog through Kelly's prayer blog and have been reading for quite a while! When I read this post I just felt like I had to comment! I too have MTHFR, had 2 miscarriages and I am 33 weeks pregnant with our first baby that has a C.H.D. (Congenital Heart Disease) that requires open heart surgery as soon as the peanut is born.

    Praying for sweet baby Sam!

    Ashley

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  19. praying so hard for baby sam! you're right, God will take care of him and this is in His hands but i have faith everything will be just fine! so excited for you to meet him!

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  20. I know that I don't not know you, but I want you to know that I am praying for you. I pray God will work a miracle an he will be born and be perfectly normal..and if there os a battle with srgeries aheas that all will go will and that God will be you stregnth.

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  21. I linked to your blog from Bethany's blog....I am praying for you, the rest of your family, and little Sam!

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  22. Look at all the lives Sam is touching! :) Any update from today?

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  23. You don't know me but I had to reply when I read your post. My nephew was diagnosed with the same heart defects when he was about six weeks old. He had two surgeries before he was six months old. He will turn 27 on October 16! He is doing fine. Praying for the same for Sam.

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  24. Matthew 21

    "I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done. 22If you believe, you will receive whatever you ask for in prayer."

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  25. Erica, I'm a friend of Bethany's. Praying for you, your family, your sweet baby Sam, for peace and healing.
    Love in Christ.
    Lacey

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  26. Eri,Trav, & Emma
    Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us (Eph 3:20)

    With Prayers for Baby Sam's complete healing.
    Love you,
    BJ & Phil

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  27. Erica, I just saw your facebook invite and found your blog link...I am so sorry to hear about last week. I can't begin to imagine where you are right now...please know we are praying for you four and trusting that God is going to do great things in this. My nephew (talked about above by LIndsay) had a similar diagnosis and is a strong healthy boy today. My heart is with you--we love you guys!

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