Our baby boy is still holding steady and doing well. At 17 weeks his MoM was 1.08. Yesterday at 18 weeks his highest MoM was 1.2 and there were no signs of extra fluid, dilated heart or echogenic bowels (possible signs of anemia.) He is growing beautifully and now weighs 9 ounces. He consistently has been measuring about a week or two ahead each time. I fall more in love with him at each ultrasound. What a blessing to get to see my baby grow week after week. He is always super active during his scans. This week the ultrasound tech told me he was the most active baby she had ever scanned. Here are a few pictures from his 18 week ultrasound:
This week has been difficult for me emotionally since this is the gestation that we found out Lucy was severely anemic. As I did during my pregnancies with Nora and Callum, I can’t help but compare this baby’s MoMs with Lucy’s MoM at 18 weeks. Here are all of their numbers together. Remember, 1.5 means the baby is anemic and needs an intrauterine blood transfusion. The closer to 1 the better.
All taken at 18 weeks gestation:
Lucy: 2.5 (no plasmapheresis, no IVIG)
Nora: 1.3-1.48 (plasmapheresis and IVIG)
Callum: 1.3 (plasmapheresis and IVIG)
Baby: 1.2 (plasmapheresis and IVIG)
All of the conversations I had with my MFMs in Alabama during my pregnancy with Lucy come back to me now- asking them to please do an early MCA scan to check Lucy for anemia, asking if we should start plasmapheresis and IVIG treatments, asking for more monitoring, etc. I think of the many times my concerns for Lucy were brushed off. The consequences of those doctors’ decisions still ripple through our family monthly, weekly, daily. Yet the doctors had no consequences and even more disappointing, they didn’t learn from their experience with Lucy. That large teaching hospital still has not updated their monitoring/treatment protocols and they do not offer plasmapheresis and IVIG to patients in similar situations. This is why I have to drive four hours each way just to get an ultrasound every week. Why, after seven years, has there been no improvement? Even after such a catastrophic loss? I think the answer is partially rooted in the fact that the people who made those decisions are not feeling the consequences of their choices. I am. Josh is. Liam, Asher, Nora and Callum are. Lucy got the brunt of it. The other patients who don’t get the best care are feeling the consequences. And it is hard for me to process that emotionally right now. Lucy was worth the extra effort it would have taken for the MFMs to monitor and treat her HDFN correctly. Her life was worth it. I wish they had felt the same way. This baby is getting all of the right care, the right monitoring and the right treatment from an MFM who sees how valuable his life is. It’s beautiful and it’s heartbreaking because Lucy deserved the same treatment that her siblings received and she deserved the same chance at life that they got.
This weekend we had some pretty bad storms in Alabama and there was a possibility of tornadoes in our area. We watched the weather man (James Spann) all day and were ready when the tornado siren went off. All the kids had their helmets on and were in the bathtub within a minute of the tornado warning being issued. Thankfully we were unaffected by the tornado and everyone is safe. James Spann kept repeating a phrase throughout the day that I have not been able to get out of my head. When there were signs of a rotation on radar but they weren’t 100% positive that there was a tornado down, they would still issue a tornado warning for the area. He said, “It’s always best to take the course of least regret.” The phrase resonates deeply with me. So often I see MFMs go the opposite route and provide the patient with the least amount of monitoring possible. But why? What if every single MFM decided to take the course of least regret? If the literature says to scan every 1-2 weeks, then do a scan every week to be safe. Check titers often, check on the baby often. If the MoMs are trending high, then rescan in a few days. Take the course of least regret because the stakes are so high. Lives hang in the balance and the consequences of the doctor’s monitoring and treatment decisions can affect patients for years and decades to come.
Next week will be hard emotionally for me as well since Lucy died at 19 weeks, so I am bracing myself for that. But I am so incredibly thankful for my healthy boy and my amazing doctor who provides such thorough care for us. He leaves no room for regret, regardless of the outcome of this pregnancy.
We checked my titer again this week and unfortunately it has gone from 128 a couple of weeks ago to 512. I will be doing three rounds of plasmapheresis next week in Atlanta and a double loading dose of IVIG right afterwards to try and bring my titer down. Our goal is to help this baby make it as far as possible before needing an IUT. I’m really hoping we can get to viability (22-25 weeks) before needing intervention. Please continue praying for our boy and for our care providers. I hope everyone is staying safe. I will update the blog after next week’s ultrasound.
Inspired as always by your thoughts and your heart. I’ll be thinking about you next week.
It’s been awhile since you updated so just stopping in to say I’m thinking of you and hope all is well!
I’m coming by every day to see if there are some news. I hope everything is ok. Thinking of you and your family.