Yesterday I shared our story when we found out Gabriel was very sick. Today marks one year since we first heard Trisomy 18. It was the first time we met the amazing medical staff who walked with us for the next 4+ months. It was the day we got these precious pictures that I will always treasure.
Today is January 7th. On January 7th, 2013, our whole world changed forever. What started out as an exciting day became the worst day of our lives.
It was a Monday and we were going that afternoon to have our big 20 week ultrasound and find out whether we were having a boy or a girl. I worked part of the day, and Tommy had taken the day off. I got up early and headed out the door for work right about the time Jack woke up. Tommy got Jack ready and took him to preschool that day. As soon as I left the house I felt sick, and as soon as I pulled into a parking spot at work I opened my car door and threw up. [And since I was 20 weeks pregnant and I throw up hard, I also peed my pants.] Not an awesome start to a work day, but I wasn’t going to let it get me down. We were going to see our baby in a few hours.
I’m sure my patients didn’t appreciate any smells I brought into their rooms that day, but I got my work done and headed out about 2:45. Tommy picked Jack up at preschool and got him down for his nap. My brother came over to watch Jack while we went to the appointment. So I ran home to meet Tommy, get Bradley set to watch Jack, and change clothes and brush my teeth! Tommy and I took off for the doctor’s office.
Usually I went to the group’s office downtown at the hospital, but for this appointment I had scheduled it at their office out west since I would be working that day. Tommy and I talked about life and about all of those exciting baby-dreaming things you talk about. The sonographer called me back and gave me a cup for my urine sample. While I was in the bathroom I realized that I hadn’t much prayed for this day or this appointment, and on my way out the bathroom door I felt it strongly pressed upon my heart to just say “His will be done”. Which I’m not sure I’ve ever said before in my life. And looking back on it, it’s pretty wild.
I headed into the ultrasound room where Tommy and the sonographer were waiting on me, and we got started. What had started out chatty, quickly became just Tommy and I talking, and then just quiet. There was nothing casual or exciting about her tone, and I just thought she wasn’t a friendly person. Everything looked the same to me – just stuff I couldn’t identify. She told us we were having a boy – that was the only thing I could identify. And after 20 – 25 minutes, she said we were done. Then she said she had some concerns and would show them to the doctor and he would talk to us about it. So she took us out to the waiting room and said he would call us back.
We waited for what seemed like forever. I remember telling Tommy that she really should have specified her level of concerns. We were talking missing hand – cause I could totally handle that. He laughed and agreed. I don’t think either of us could have imagined how bad it would really be. So we talked about mindless stuff – just talking to keep our minds from wondering what was going on. I was so nervous.
Finally, a nurse called us back. She got my weight and blood pressure – like any of that really mattered. And she said the doctor would be right in. We went to a big group where you rotate which doctors you see, so I had never seen this doctor before. He was rattled. Tommy and I learned last January that you never want to be the one who rattles doctors. It doesn’t bode well. He walked in the room and said there was no easy way to say this, but they saw problems with our baby’s brain, heart, and stomach and thought there were signs consistent with down syndrome. I asked him how bad it was, and he said we should consider terminating. He had a specific name for the heart defect the sonographer thought she saw, and Tommy memorized it so we could look it up. The doctor told us we would go see the specialists and they would know more. We went out to the front desk and the nice ladies there commented on how beautiful our baby was in the ultrasound pictures we had. And they were still working on making our appointment. They finished and gave us the instructions for where the Perinatal Center was and to be there at 1:30 the next day.
We walked out the door and just both started crying. We stood by the elevators and cried for a few minutes before going down. We got in the car and cried some more. I remember needing Tommy to help me walk out of there. I just leaned on him and walked and cried. He drove us home. I can’t remember much of what we talked about or how much we actually talked. I just remember feeling helpless. Our best case scenario at this point was a baby with Down Syndrome with a repairable heart defect. And we prayed hard for that over the next 18 hours.
That night was a blur as we waited for our appointment the next day. I remember us looking to the Bible for hope, I remember us praying for the best case scenario but also the ability to accept the worst. And I remember the life of this sweet baby becoming so incredibly important to me that day. We hadn’t talked about a name for him yet, so we sat down that night and picked out a name for him that would be as full of meaning as his life was of purpose. And that was how we settled on Gabriel.
It’s hard for me to believe that we have now lived a full year of not a normal life. It’s also really precious for me to look back on the time between January and May of last year when Gabriel was with us. His life was precious and it’s so special to remember all of those moments we had with him.
I’ve never shared all of these details about January 7th before. It’s a day that has changed my life forever, and it is certainly one of the worst days of my life. But it doesn’t take away my hope. It was the hardest day of my life up to that point, but we survived it. God brought us through that day and all of the days to follow. I wanted to share about that day one year ago because I know that some of you know exactly how that day feels. I know you’ve lived your own version of it, and you have your story of your worst, shocking day to carry with you, too. And I want you to know that you aren’t alone. You are loved. And I pray that you will carry that day as part of your beautiful story. And for those who are walking this walk now, know it will get better. It will never go away [and I’m thankful for that], but it will get better. One day, you too, will be able to share your story while missing and remembering your loved one. Or maybe celebrating their life and their healing. And for those to come, know that your story is unique and precious, but that others have walked this before you and you will get through it, too. And know that you can find help here.
Today we remember our sweet, precious boy, and celebrate a life that changed ours forever. A life who shared about grace and love and blessings and God’s purpose. We will always love and always miss our precious G.
I remember 28 weeks being a big appointment when I was pregnant with Jack. We had an ultrasound where we got to see him, and I had to do the gestational diabetes glucose test. This week was my big 28 week appointment with Gabriel. It was a long one, although not the longest we’ve had there. We’ve spent hours there before sitting in rooms talking and crying. So it was nice yesterday to feel kind of normal. We were like all the other women who come in for their 28 week appointments, except for the fact that we’re entirely different.
I was nervous about the fasting because I have had such a good streak going the past few weeks with the nausea and vomiting. If I go too long without eating, or don’t get something in me first thing in the morning I tend to get sick. Thankfully everything was fine yesterday, and around 12:30 I scarfed down 2 corn dogs, cheese fries, and a lemonade.
I got my blood drawn, 3 different times, had another growth ultrasound, and a doctor’s appointment. The ultrasound went really well. It’s always great to see Gabriel in action. The sonographer said he’s the fastest baby she’s ever seen. He moves around a lot and apparently pretty quickly at that. He is an incredibly active baby, and I’m so thankful for that. I’m so thankful that I get to feel him moving around. He is certainly alive, and he reminds me of that quite often.
The important information from the ultrasound… Gabriel is doing great! They did a test called a Biophysical Profile, and he got a perfect score! That did my heart good. While it doesn’t change our reality, it tells us that he is doing just fine right now and that brings us great joy. He still has the big issues. The choroid plexus cysts have not resolved. His brain has some issues. He still has a severe heart defect. But he is doing well in there right now, and we are thankful for that. The BPP evaluates several things including movement, muscle tone, heart beat, and breathing. He was good in all of those areas. His heart beat was nice and strong, and he was very active, as usual. They estimate his weight to be 1 pound, 14 ounces. Almost 2 pounds! We’re really excited about that. He’s still below the 5th percentile for babies his gestational age. The average baby at 28 weeks weighs 2 1/2 pounds. But we’re glad he’s still gaining weight, and we will continue to cheer him on and pray he gains more! The piece of bad news from the ultrasound is that I now have polyhydramnios, which means too much amniotic fluid. Right now it doesn’t really matter. We know it’s happening because of Gabriel’s genetic syndrome and we’ll just keep an eye on it, as with everything else. If there continues to be too much fluid, it could cause me to go into labor earlier, as my body would think I’m further along than I am. Tommy keeps reminding me that this is not unexpected; I was just hoping it wouldn’t happen. We were told when we first found out about Gabriel’s diagnosis, that this is a common thing to happen. Trisomy 18 babies often have trouble swallowing the amniotic fluid the way babies normally do. This can lead to a build up of excess fluid because the typical circulation of the fluid isn’t happening. Hopefully it won’t be an issue for us — maybe next time we have an ultrasound my fluid level will be normal.
Our visit with the nurse practitioner and doctor were good, as always. They’re so kind and always take their time with us. The nurse practitioner told me I’d lost a pound, so we talked for awhile about eating. I’ve not gained much weight in this pregnancy and am probably below a normal weight gain. She said that she doesn’t think it’s impacting Gabriel’s weight but that it couldn’t hurt for me to try to gain more weight. She said they had a patient who had a very small baby, and she started eating Magnum bars and her baby got bigger. Granted, that’s not science-based medicine, but it’s something. I could gain 50 pounds this pregnancy and Gabriel not get any bigger, but it’s certainly not going to hurt me to try to eat more and gain more weight in hopes of it helping him gain weight. So… I bought some Magnum bars. And they are delicious! There’s no doubt that I’ll be putting weight on now.
The doctor spoke very kind words to us. He told us that he doesn’t see patients our age going through this. That we’re unusual. And that we are both handling everything very appropriately. He said he’s very proud of us and how we’re handling it. And he hugged me and gave me a kiss on the forehead like he always does, and I cried right there in front of him… again.
Between not sleeping a whole lot the night before, fasting the whole morning, getting a bunch of blood drawn, seeing our baby moving around, and realizing again our reality, it was an exhausting morning. I’m thankful those appointments aren’t every day, or week. But at the same time I’m again, so very thankful for the care we’re getting at that office. It was a hard morning but a good one.
And that precious arm. Which is getting bigger!