Two doctors, one baby, a lifetime of love and respect

I thought I’d share a few pics of Eli’s nursery. For those of you who have followed my blog since our journey started, you’ll see a familiar Bible verse, Jeremiah 1:5, on the wall above his crib. That is the verse our OB, Dr. Michael Lawler, quoted to us the day we saw him after our MaterniT21 test confirmed that our baby would have Down syndrome (for the whole story read my very first post to this blog, “Acceptance”). Yesterday, at our last visit with Dr. Lawler before our c-section on Thursday, we showed him the picture of Eli’s nursery wall with that verse. We wanted him to see just how much that verse, quoted to us by him, had impacted us. It changed my perspective on everything. It led me towards acceptance.

I am forever grateful to Dr. Lawler, as well as our radiologist (ultrasound doc), Dr. Kevin Case. These two men have been instrumental on our journey. They have helped us to keep the faith. Both encouraged us at our weakest. They never implied that we should give up on our baby (sadly, many doctors do). We have been so blessed to have these two spiritual, compassionate, honest men lead us down a path we once saw as difficult. Now that we are at the end, we see the light and we give many thanks to these fine doctors for helping us get there. Please keep both men in your prayers – for they truly deserve all of life’s blessings.

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A special thank you to my amazing husband for making Eli’s room absolutely perfect!

A brand new day

We went in for another level 2 ultrasound on Tuesday. Our little boy was very active. The doctor was impressed with his muscle tone and his strength. Everything looked great! Even his heart!!! Dr. Case did confide in us that at the 17 week scan he was quite concerned that what he suspected to be a heart defect (Atrioventricular Septal Defect, or AVSD) was going to be a large one. So we went in to the scan hoping for good news but expecting the worst. For once we received good news!!! The defect, if there even is one, is very small – so small in fact he’s not even sure if it’s there. We have another ultrasound scheduled for July 31, I’ll be almost 27 weeks then, to see if it’s actually there or not. If it is, or if it’s still inconclusive, we’ll get an echocardiogram of Eli’s heart done at Children’s Hospital in Seattle. I am so thankful for the wonderful doctors that are along this journey with us. They truly have our son, and our family, in their best interest. I can certainly feel the love.

If you asked me a month ago, I would’ve said I regretted finding out that Eli had Down syndrome prenatally. It took away the joy of the pregnancy. Instead it was filled with worry, grief, and anger. Today, I am happy to report, the joy is back! I love feeling my baby boy kick at me. I giggle when he has hiccups. I love hearing Cody tell people Mama has a baby in her belly. I no longer try to hide the fact that I’m pregnant by wearing baggy sweatshirts (thank goodness since summer has finally arrived in Seattle!). I proudly shop for maternity clothes and will talk about Eli to anyone who asks. I will talk about Eli. I may or may not talk about the Down syndrome. That is just a part of him. It is not all of him. He is my baby and I am so proud of him. So proud that his kicks are strong. So proud that he impressed the doctor. So proud to hear his strong heartbeat. I have a feeling this is only the beginning of things he does that make me proud. Today, I am one proud mommy of both my boys.

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No Judgement

Please don’t judge me. I have been sent on a journey that I pray others will never have to go on (but I know some will).

Something this experience has taught me is to judge less. I’ve always been a pretty judgmental person. Although, in talking to others, I’ve realized most people tend to be pretty judgmental too. I guess that’s just the way society is. I’m hoping to change and live my life in a less judgmental, more accepting way from this point forward.

When we first started the process for prenatal testing we honestly did it just to get the better ultrasound to find out the gender (you do all the prenatal testing at a specialist office that has fancier ultrasound equipment). At our first ultrasound appointment with Dr. Case (our amazing Radiologist) he mentioned that our baby’s nuchal translucency fold at the back of his/her neck (we didn’t know he was a he yet) was measuring “a little high but not out of the normal range” (it was 2.6 – up to 3.0 is considered “normal”). That put my odds of having a baby with Down Syndrome at 1 in 220. He said they’ll know more after the blood work but that he was sure it was fine. We mentioned that it didn’t matter to us either way as we’d keep our baby regardless.

Fast forward a week or two (at this point, timeframes are a bit of a blur) to May 1. We received a call from the genetic counselor saying that the blood work came back abnormal and that the odds of our baby having Down Syndrome were now 1 in 3! Um, what?!?! I didn’t expect to hear that. I was hysterical. Chuck came home from work and we made an appointment with the genetic counselor right away. She informed us that 90% of Down syndrome pregnancies end in medical termination. 90%?!?! What?! I honestly didn’t think it’d be that high. We stated that we would not be choosing that path but then again we did not have a positive diagnosis as of yet.

We wanted the opportunity to prepare if our child did in fact have Down syndrome, so we opted for further testing. We decided to do the new MaterniT21 blood test. It’s a less invasive alternative to an amniocentesis with the same accuracy. We waited 8 very long days for the phone call from the genetic counselor telling us the test was positive. We set a meeting with her for the next day so we’d have a day to process the positive results. I honestly don’t remember what we discussed at that appointment besides the “decision we were facing”. I wish I could say that we were still as adamant about loving and keeping our baby regardless of diagnosis but as you may have read in the previous post, we were devastated and grief stricken. I was hung up on that 90% number. I asked every doctor we met with why it was such a high number. Each had different answers. One said it was based on geographic location. Another said it was based on ethnicity. One said it wasn’t that high, maybe only 60%. Honestly, I don’t think the study that put out that 90% number is very accurate, but I personally haven’t taken any polls.

My point in all of this rambling is that you cannot, and should not, make judgements unless you’ve walked in someone’s shoes. The decision to keep our baby was the hardest decision I hope we ever have to make (but I’m guessing it won’t be the last of hard decisions we will have to make). We had to think about the quality of life for our baby, for our older son, for our family as a whole. We had to think of the financial aspects and whether or not we were emotionally capable of caring for a child with special needs. Our choice was one in the minority. We know this child was sent to us because, even if we don’t have faith in ourselves, God has faith in us. We have accepted the challenge, but many people do not. And regardless of your stance on abortion (pro choice or pro life) those people should not be judged or looked down upon. Just like we shouldn’t be celebrated for choosing the opposite. For parents, who are in the midst of a planned and wanted pregnancy, having to make a decision like this is cruel and unfair. We spent many sleepless nights wondering, thinking, worrying, debating – as I’m sure most parents who are faced with the same decision do. Many people know right away what they’ll do. Many people think they know what they’ll do. We knew, but we had to go to the depth of our souls for confirmation.

We are grateful for our little boy, extra chromosome and all. We can care for our son and provide for him. We know that our family will be whole with him. Will we face challenges? Most definitely. But we will face those challenges the same way we’ve faced other challenges in our lives – together.