Thursday, August 6, 2009

23 Weeks. Ultra Sound: The whole story

Weight: +20 lbs
Biggest belly point: 38 1/4"

Forgot to report that your heart rate at 20 weeks was 150 bpm.

I think I'm ready to tell the whole ultra sound appointment story. I've been meaning to sit down and do this for about a week now- but we've been SO BUSY, and I knew it was something that would take some time to do. Here goes...

The midwife group I see had me schedule my ultra sound at the UVRMC (Utah Valley Regional Medical Center) since they don't have the equipment to do it in their offices. I scheduled it for the earliest time (9am) so Jake could go with me and go right to work afterwards. We loaded up the boys that morning and everyone was excited- even Dekker, though I'm not sure he understood what was going on.

We got there about 10 minutes early, but they didn't call us back till 9:20. The technician was nice and pointed out the heart, the feet, hands, and that WE'RE HAVING A GIRL!!! We were all so excited- and Jake surprised- to hear that. The technician was taking longer than I had remembered with Josh or Dekker, and was spending A LOT of time measuring certain things, and KEPT looking at the heart. I figured they probably are just more thorough there at the UVRMC, and maybe now there were more things that they tracked/looked at than with Josh. When she was done she said she'd go and get the doctor to come in and look and "tell me what she sees". That worried me for a moment- but I remembered that every time I'd had an ultra sound the doctor came in to go over it as well after.

We waited for A LONG TIME. Jake sent a mobile update to his facebook about a girl- but was getting a bit anxious to get to work. Another lady came in and explained she was a Nurse Practitioner and also wanted to take a look before the doctor came in. This worried me for a moment- but she said, "all the patients get triple treatment with me here this week". Okay... So she squirts more stuff on my belly and starts looking around, but she's even MORE slow and it seemed ALL she looked at was the heart! I'm thinking in my head- this poor lady is really new at this and only knows how to find the heart! By this time the boys are DONE being in there- they found out what they wanted to know, and now they're running all over the place and Jake is trying to keep them from breaking all the really expensive equipment as well as running Josh to the bathroom, etc. She leaves and says the doctor will be in next.

We wait for a long time again, and Jake is saying, "I really need to get to work!" The RN and the Doctor then come in. And I'm all restless, thinking, "finally- lets do this and get out of here!" The doctor checks out a couple things and then again goes to the heart, but says, "there's a good baby". After that she turns to me and says the frightening words, "There are a couple of things we need to talk about with your baby..."

My heart sank. That is NOT what I wanted to hear. All thoughts about how long we'd been there and frustration that 3 people were spending SO MUCH TIME looking at my baby vanished. First she says, and then shows me what looks like a little bubble in the babie's head- "this is a choroidplexis cyst" she explains that we all have these, but in 1-2% of babies they enlarge to a point that they see them on an ultra sound. But she emphasises that they see these in 1-2% of all babies and I'm thinking, okay... so what does that mean. She said MOST of the time these cysts go away on their own- and have no lasting affect on the baby. However, they CAN be a "soft marker" for down syndrome. "How old are you?" she asks (31). Okay, the NEXT thing I see is that your baby has "two dots in her heart" (EIF). She emphasises that these two are ALSO seen in 1-2% of all babies, and can end up having NO AFFECT on the baby, BUT (and here is where I start to cry) when we find two of these soft markers together, and we look at your age we have to start lookin at the possibility chances of your baby having Down Syndrome. I'm obviously upset at this point and look over at Jake who just looks stunned. She tells me she's sorry to be telling me all of this, but its important for me to know and understand my options. She then goes on to say that the baby's belly is also SLIGHTLY outside of normal measurements- but that she's not too concerned about that since it's only by a small amount (she could have merely just swallowed a bunch of liquid and have a full belly) and there are no other signs of problems in the abdomen (such as a "double stomach" or blocked stomach or something like's all such a blur). She was very assuring and calming at this point- giving me stats, facts, and positive thoughts (I'm glad she was such a good doctor).

She said the good news was that the hard markers such as a heart deformity and other problems were not present in our baby. She asked if I'd had early blood tests to measure the DS possibilities to which I told her "no". She explained that with the two soft markers and my age, that without blood test results there was a 1/100 chance our baby had Down Syndrome. She said blood tests could give us a much more accurate number. She said, it'll still only be a ratio or chance, you can have an amnio which is 99% accurate, but that there 1/300 miscarriage chance with that. She suggested we have the blood test done- which could come back saying the chances are only 1/10,000, but could also come back saying 1/2 chance. She said after those tests we could think more about an amnio- but told a story of one patient who's blood tests came back 1/2- but chose NOT to have the amnio, and the baby was born WITHOUT DS. Jake and I decided that we wanted the blood tests done- so she gave me an order for one and told me I could go to the outpatient building and have it done at any time. However, the blood tests would take two days to come back, so if I had the test done that day (Thursday) that would be a Saturday for the results coming back- she said that she'd leave a note for someone to call us if there was someone in on Saturday- but that more than likely we wouldn't hear back until Monday since the hospital staff is so reduced on the weekends.

We quietly and quickly gathered our things and headed out the door- without bothering to pick up the $2 DVD of the ultrasound. Jake had to get to work- and so I drove him there and then had to go back to the hospital for the blood tests. What was suppposed to be a happy momentous occasion left us stunned. We were saying positive things to each other, trying to boost the other up- but I think we were really both still in a state of shock. I dropped Jake off and then headed back to the hospital- the kids WERE NOT happy to be going back there- but I told them if they were good I'd take them to McDonald's after for lunch and play. I had my blood drawn, took the kids to McDonald's and ate my lunch without tasting a thing (probably a good thing since I'm not a McDonald's fan). Honestly as I thought and prayed silently to myself I felt more peace than I expected and felt assured that everything would be fine- that our baby did NOT have DS. Later when I got home I found a few minutes to read a little more online and found several stories of women in similar circumstances who's blood test results came back with very good news and then had healthy babies. Some also had amnios that gave them good news- again I felt lifted. But there was STILL that CHANCE.

That night was the worst- that's when the fear set in. I finally started to think about the WHAT IF... I don't think I slept at all that night. We'd decided not to worry anyone unless we got back worse numbers from the blood tests. We only told my mom, Jake's mom, Jake confided in Chris at work, and we told his brother who was here staying with us- and assisted Jake in giving me a blessing. Though we both felt that Naomi (we quickly decided on a name so that people could pray for her by name and we could put her name in at temples) was going to be perfectly healthy and normal- but we also began to talk about the possibility of having a DS child. It's interesting all the thoughts and feelings you go through at a point like this. I was never angry or upset at the thought of having a child with DS- but I knew it would be a great challenge. I've met people with DS before and they are always very kind, gentle people- I knew that for that reason we as a family would learn a lot about compassion, love and patience. As my mother pointed out- of all the physical/mental challenges to be faced with- it really is one of the "better" ones. Yet as everyone was congratulating us on A GIRL- I couldn't help but wonder if I'd even care if we were having a boy or girl if I could just be told they didn't have DS and that everything looked "normal". We prayed A LOT. It was hard to always know what to pray for though- because I wanted to have faith that Heavenly Father could make everything okay, and trust in that power- yet I also know that none of us is exempt from facing trials and I wanted to be able to accept whatever His will might be. Mostly I prayed for peace, and that our little girl would feel loved and accepted from day one no matter what!

I had an appointment with my midwives to review the utlra sound later the same afternoon. I went with more questions. I visited with two of the three. One, Jana, was particularly helpful. She shared with me that she had gone through a similar experience with one of her daughters and empathised with how hard it was to WAIT for results and know what to think/feel. She tried to help me see the positives and told me that we WOULD NOT HAVE TO WAIT TILL MONDAY FOR RESULTS! She said that they would have someone on call on Saturday- and that as my caregiver would have access to the results on Saturday and that I should call the after hours number and have the on call nurse look up the results. That was VERY good news. As I said, Thursday night I hardly slept at all. Friday I was on an emotional roller coaster. Josh a couple of times would shake me out of it by giving me a hug and asking why I looked sad. Friday was the day that Jake and Rick gave me a blessing though- and I actually got a decent amount of sleep that night.

Saturday morning I called midwives a little after 9am (as instructed). The nurse on call was the one nurse I don't yet know- so I explained my case and she told me she was at home and that it would take her a while to get into the system from her home computer- but that she would look it up and call me back within the hour. She called back about a half hour later and told me she'd found the results. She said the results came back "normal" and then gave me the specific numbers which was 1/5,000 for Down Syndrome. I cried and told her thank you and that I felt that was GREAT news. I ran down to tell Jake and Rick the good news. Jake gave me a hug and smiled, but was quiet. He wanted me to go over all the numbers and things she had told me. We both agreed we could trust that Naomi would not have Down Syndrome. I was glad Jake felt the numbers were good enough since he'd expressed that if the numbers came back less than 1/100 he would want to explore/talk about an amnio more- whereas I was very much against it. We agreed we'd talk more about it if the need came.

Jake later told me it had been hard for him to know how to react at first "because we would have loved her just the same had she had Down Syndrome". Though it was a relief to get such good numbers back, we both are more aware that there is still a chance of DS, but also more aware of what a chance we take ANYTIME we conceive- and what a MIRACLE life - especially healthy and "normal" babies are. I called my mom, and Jake's mom. Jake's mom said that all she'd been able to pray for was that the results would come back well, but said that she also felt that as she thought about it she was grateful to realize (and we felt this way too) that our family would be strong enough and kind enough to welcome such a special spirit were the Lord to need to do so. And that's what it all comes down to.

1 comment:

  1. Jaime,

    THANK YOU for sharing this. So tender. I am so grateful about the good news. What a roller coaster. I'm sure it was so difficult hearing all the congrats while this was going on. Can't imagine. There is a reason in all things. This could give you the necessary empathy to lighten the burden of a friend who might be faced with a similar situation down the road. This little girl is so blessed to be born into your family. Love you!