History Becomes Training

I have often said that pregnancy is the easy part of our journey, that getting pregnant and staying pregnant for the first two months is the hard part. After we got pregnant this time my husband has been pretty adamant that we’re not doing treatments anymore. Since we’ve never achieved pregnancy otherwise, this essentially was supposed to mean that the hard part was over. This past Thursday we had our anatomy/gender ultrasound (at 21 weeks, 2 days) and came to the difficult realization that our hard part is not over. Our previous heartache, it appears, has just been training for what is to come.

I woke up Thursday giddy about what the day might bring. My appointment wasn’t until 3:30 and I could hardly stand the wait. I went to work and was thankful for a day full of meetings to occupy my mind. My boss asked when I would leave for my appointment and that led to my first important decision of the day – would I take the time to go home first or just meet my husband at the doctor’s office. I decided that if I had time, I would like to leave earlier so we could drive together. I wouldn’t drive all the way home, but rather meet my husband at our in-laws when he dropped off our daughter. Perfect.

The entire drive there we talked about how excited we were to find out if it was a boy or girl…ok, I talked about how excited I was and my husband just smiled and laughed. He wanted a boy to round out our ‘All-American Family’, but I really would love to have a girl so that our daughter could have a sister. I also figured that if we had a girl then it would be easier to convince my husband to have more children until he had his boy.

We arrived and after a very short wait, we were called back to the ultrasound room. As the ultrasound began it was all I could do to keep myself from rushing the tech to get to the good part – I just wanted to know if it was a girl or boy and the rest was just details. She went through a series of shots of arms, legs, body, etc. Then I saw a picture that looked like an upward shot of her butt/legs…and I didn’t see anything sticking out. In excitement I blurted my findings. She smiled and said “Yes, we don’t see anything yet, but I’m looking for a specific picture.” The famous three lines. A little move here, a wiggle there and she found the shot she was looking for – it’s a GIRL!! I was so excited I started to tear up. While I knew my husband would be ever so slightly and temporarily disappointed, I was ecstatic.

The ultrasound tech resumed her analysis of the other organs. There were the kidneys and even the blood flow by the kidneys. Placenta, cervix…everything looked good. Then she got to the heart. As she began looking at the heart she didn’t say a whole lot. She hadn’t been particularly chatty, but she was even more quiet than she had been. I remember with my daughter’s ultrasound that the tech zoomed in and showed us the four chambers. It was really cool. Since she wasn’t saying anything I figured I would continue the conversation. “All four chambers?” I asked it like a question, but what I meant was “I know there are four chambers, would you hurry up and zoom in to show them to us because you’re starting to make me nervous.” She wanted another angle, then another angle, then she wanted me to lay on my side, then the other side, then back to the middle. She sure was taking a long time to find the ‘right angle’. I also realized that she was only marking “L” in most of the views, but wasn’t sure if the “R” side was a given and only one side was necessary to mark in all of them (and I still don’t know). I asked her if she saw a problem or if it really was just an angle thing. She said just the words that I dreaded “I’m not sure, the doctor will take a look and then he will explain everything to you.”

We returned to the lobby. As we waited, there wasn’t a whole lot to say. We played a game on the iPad, watched the news, waited some more. It sure was taking a long time. Finally we were called back. We started with the regular checkup things: weight and blood pressure. The nurse commented that my blood pressure was higher than normal. I briefly explained that we were ‘slightly terrified’ that something was wrong with the baby considering the extra attention placed on her heart during the ultrasound. She said that was understandable and led us to the room to wait for the doctor.

The doctor came into the room and we could already tell something was wrong. He began with the normal greetings. Without answering, I asked what was wrong with her heart. With a sigh he looked back at the chart (broke eye contact). He began with all the information I already knew (changed the subject). Baby’s size looks right on track, this looks good, that looks good, everything looks good…except…the heart. He explained why it took so long to call us back – he had consulted both ultrasound technicians (both with 20+ years experience) and then consulted the pediatric cardiac specialist who happened to be in the office that day. There is definitely something wrong. What he did NOT say was “we’re not sure yet, but it looks like there might be a problem and we just want to get a better look.” He said he didn’t know exactly what was wrong or the severity of the problem, but that no heart problem is good and that he would schedule us for a fetal ECHO with the pediatric cardiologist specialist on Tuesday. Of course, I burst into tears. He continued talking and I remember hearing phrases like “they can do amazing things nowadays” and “high risk pregnancy specialist”. He explained that most likely there is little immediate risk to the baby as she is getting what she needs from the umbilical chord, but the things that need to happen at birth would be the risk..but then he stopped and said he was getting ahead of himself and that they really wouldn’t know anything until Tuesday. He recommended staying off the Internet (yeah right) and that we would get details about Tuesday sometime the next day. And that was it. There was no more to say. No more information…not that I could have really taken in much more information at that time.

We returned to the car silent and numb. While I don’t remember much, I remember that the first song that played on the radio was “No Matter What” by Kerri Roberts.

It was a song that I needed to hear. While the beat, I admit, didn’t match my mood, the words are perfect. I refuse to crumple into the mess that I was when we lost our first babies. I guess I really have come a long way since that time. I realized that I’m not angry. I don’t even know how to describe what I’m feeling. While anger was my first emotion in the past, I haven’t felt that way even for a moment this time. I feel numb mostly, but not angry. I found it odd as well that most of my questions don’t center around “Why”. Believe me, I have lots of questions: What does this mean for our precious miracle baby – will she make it, how many surgeries will she need, is this a fix it and forget it problem or will she be permanently affected? What does this mean for Jessica – will she ever get to know her sister, how will she react if her sister has a permanent condition that requires great attention, will she fall in love with her precious baby sister only to have her endure the heartache of losing her while she’s young, what will they be able to do together, will they even get to grow up together and for how long? What does this mean for our family – will she be able to do the things we’ve longed to share with her…camping, traveling (even to places in high elevation) hiking, skiing, amusement parks, sports. Will we be able to provide for her financially and still be able to bless Jessica with the perks in life that we’ve always wanted for her? So many questions…none of which we can even begin to conjecture about until Tuesday, if even then.

The next morning I posted this on my Facebook:
We are expecting a baby girl…and that precious miracle baby girl needs some prayer. Our ultrasound revealed a problem with her heart. They/we don’t know what or how bad it is (we see a specialist on Tuesday), but as explained to us “no heart problem is good.” We do know that God can perform miracles on His own and through doctors…and that many of His most gifted doctors are right here in Grand Rapids. We are praying for one of those miracles – no matter the shape or size.

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14 Responses to History Becomes Training

  1. Tanya says:

    I’m so sorry you are dealing with this. You are right, Our God is a God of miracles and i pray that He works everything out so no further action will be needed. However, I have had 2 friends within the last 6 months give birth to babies with heart issues. Both were cared for at UofM in Ann Arbor, and after extensive surgeries and stays, both are doing beautifully.

  2. akarel says:

    Tanya – out of curiosity, are your friends in Ann Arbor because there is better medical care there than in Grand Rapids or because they just live closer to there? I’m completely unversed in where the best care would be (if we would expect to be in GR or sent somewhere else). I’m sure that will be explained on Tuesday to us and we’ll get caught up really quick in a lot of unknowns, but I was just curious if you knew.

  3. Jamie says:

    I don’t want to step on feet, but I believe it is because De Vos does not have a pediatric heart surgeon.

    Just want to put a little hope out there- our first ultrasound with Tessa, they could not see either of her kidneys or her bladder. She obviously has both. I am hoping that miraculously whatever was missing will show up unexpectedly and in a mighty way!

  4. Debbie Nalley says:

    Praying for you, your little baby, and your family!

  5. Joye says:

    Hi! Neysa (Mason’s mom) sent me your way. My name is Joye and my son, Ethan (almost 3) was born with a heart defect, among other birth defects. He’s had many surgeries, two of which were open heart, but he is a thriving, active, opinionated little boy today! Feel free to check out our blog and his story … joyemullis.blogspot.com … I know this is a scary time for you, but know there are many of us “heart mamas” who are ready to offer you support and encouragement along the way. I’ll be following your story, and praying for your appointment on Tuesday!

  6. kirsten says:

    The description of your ultrasound sounds eerily familiar to the one we had with our firstborn (a boy). I know the talk of “angles”, of the ultrasound tech’s silence, of taking all that extra time on the heart when you’re just most excited to find out the sex. Our son had a heart defect, too.

    You have tons of questions and will have tons more. It is hard (almost impossible!!!) to stay off the internet when you’re dealing with something like this, but it’s good advice. Ask the pediatric cardiologist lots of questions. Trust those doctors. They aren’t perfect, but they’ll tell you more than any blog can.

    It’s such a scary time, I know. You’re afraid and wondering about outcomes. There will be days it feels impossible, but you and your family WILL get through this. Even when it feels like God is hiding or far away, He is there.

    Thinking of you with love. Take heart. Have courage.

  7. Rebecca says:

    Hey! Neysa sent me your way too. Just know you are not alone. We had the same experience as you have had and it’s a feeling of being helpless. But trust in God and let others help you. Our daughter was born at 29 weeks with Tetralogy of Fallot (same as Neysa’s son). You can check out her blog at babyclairesblog.blogspot.com if you want to read about our heart journey. Praying for you and your family!
    Feel free to contact me!

  8. Melissa says:

    Another “heart mama” who found her way here through Neysa’s link — sending much love your way. Our little boy had open heart surgery when he was not quite three months old and he is doing wonderfully now (2 years old)! Please know there are many prayers being offered for your family and especially your baby.

  9. Jill Haskins says:

    Hi! Coming over from a post about you on Neysa’s facebook.

    I don’t want to be a discouragement to you. My son, Joshua was born August 16, 2010. He had Hypoplastic Left Heart Syndrome. He lived for 51 days and passed away due to complications with the HLHS. I don’t want to discourage you with our story, but I wanted to offer you support and love.

    We have traveled this journey, and it’s a tough one, but by God’s grace, you will survive it. This is an extremely scary time for you, but we are a great community who will help you and support you through thick and thin!

    If I can help you in any way, please don’t hesitate to reach out. My email is jillhaskins1@yahoo.com and my blog it http://fierceandfeisty.blogspot.com

    I am praying for your appointment on Tuesday and will be checking back in on you!

    Much love,

    Jill

  10. Christine says:

    Hi! Congratulations on your pregnancy! I heard that you’ve joined our heart mom club. I’m sorry you are here, but know that we are a supportive community with piles of information if you need it. My son’s heart defect was first detected at our 19 week ultrasound, They thought they saw a hole… maybe. They had us come back, 2 weeks later and recheck and they confirmed the defect. Once I got over the shock, I did begin blogging our experiences up through his open heart surgery. You can read about it at http://slowslidetosanity.blogspot.com

    Do be careful with Dr. Google. He gives outdated information a lot of the time. The pediatric cardiology field is amazing and rapidly evolving. There are incredibly talented people available to help your family. *HUGS*

  11. Jill says:

    I found yoir blog from Neysa. I’m a heart mama as well. I have 2 kids with CHD. They have both had surgery and habe 3 defects. Its amazing what they can do these days. Pleade know you are in our thoughts & prayers. There is lots of support from heart moms here. Hugs.

  12. Andrea says:

    My name is Andrea and I’m a heart mom. Neysa shared your blog with me and directed me here to offer support. My story is a little different than yours.. Our heart son Max wasn’t diagnosed until he was 2 months old! I can’t relate completely (as our diagnosis came after birth) but I do think I know a little of what you’re going through. We are one surgery down (plus more in the future) but today Max is 17 months old and doing GREAT (also he is currently 100% medicine-free)! It amazes me how close we came to losing him compared to how well he is doing today. I know right now everything seems scary but it WILL be okay. Just as God is working miracles in Max’s life I know he will do the same for your little one. Many prayers for the upcoming appointment. Whatever the diagnosis may be I hope you find comfort in knowing that you’re not alone. *HUGS*

  13. Jill Haskins says:

    oops! I spelled my blog name wrong! http://fierceandfiesty.blogspot.com

    Sorry about that! :o)

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