Well, our baby’s anemia escalated quicker than we expected. At 24 weeks the baby’s MoM was 1.23, which is a good number. Six days later his number had jumped to 1.5. A few readings were just below 1.5 and several were as high as 1.56. This is why it is so important to have weekly MCA scans if you have a critical titer. Many MFMs do MCA scans every two weeks, even for women with high or critical titers. Some MFMs say they will scan every two weeks and if the number goes up to 1.3 they will start scanning weekly. But fetal anemia can happen in a matter of days. I can’t imagine what would have happened if we were scanning every two weeks or waiting for a 1.3 to start scanning every week. My son might not be alive right now if we had. Women with antibodies, if you have a Kell titer of 4 or above or any other antibody with a titer of 16 or above, insist on weekly MCA scans. If your MFM won’t provide the weekly MCA scans, find an MFM who will. It is worth it. Always take the path of least regret.
Dr. Trevett performed our son’s first IUT at 25 weeks and 3 days. I was incredibly anxious and nervous imagining all the things that could go wrong and thinking through what would happen if baby had to be delivered at 25 weeks. I was focusing way too much on the fear and risks instead of focusing on God and leaning into Him for comfort. Time and time again I have seen the consequences in my life of not spending enough time reading my Bible and praying. When I don’t discipline myself and set aside time every day to spend with God I make selfish decisions, I live in fear and doubt and I miss out on so much abundance and peace that could be mine.
Anyway, I’ve been so busy that I haven’t been spending daily time with God and leading up to the first IUT I was an emotional mess. We also had COVID risks and restrictions, protests and a curfew in Atlanta that made things a bit more difficult logistically and emotionally. The day before the IUT I was having a lot of contractions, some spotting and decreased movement from the baby. Dr Trevett told me to go right to labor and delivery once we got to Atlanta. Once we were there the baby started moving more and contractions spaced out and basically disappeared. They watched baby closely and he looked fine on the monitors.
The next morning the IUT didn’t go quite as planned. They had trouble getting good access to the cord (possibly because of contractions and shifting of the cord placement.) The paralytic they gave the baby did not work and he continued to kick and move during the procedure. They gave him a second dose of paralytic and he still continued moving around. The anesthesiologist told me once I was in the OR that he had decided to just use a local anesthetic instead of an IV sedative for me, which immediately increased my anxiety. I asked him to please give me the sedative like we had discussed and he did, but it didn’t seem to take the edge off for me. I still felt completely awake and too aware of the procedure to relax. The baby finally bucked and knocked the needle out and Dr. Trevett decided to stop the procedure. Baby’s beginning hematocrit was 25 and it looked like they got 20 ccs of donor blood into the cord but they weren’t able to get an ending hematocrit because the baby was being so crazy.
The baby never slowed down or stopped moving, which is really not safe during an IUT. I was glad that Dr. Trevett and Dr. Gomez (who helps with all of my IUTs) decided to stop the procedure. They repeated the MCA scan the day after the IUT and the MoM was the same as it had been before the IUT which gave the impression that baby was still anemic. Dr. Trevett decided that he wanted to go in again 48 hours later and repeat the IUT. Selfishly, I was very disappointed that we had to do it again so soon but deep down I knew that was the safest choice for the baby. I called Dr. Moise and discussed the IUT with him and felt much better afterwards. He also thought it was a good idea to repeat the IUT 48 hours after the first.
For the third time in a week we drove the four hours to Atlanta (thank you Mom for watching all the kids for us last minute!) This time I knew I had to do a better job preparing mentally and emotionally for the IUT. I spent time reading my Bible, praying, listening to worship music, etc. I read an Instagram post from Kalley Heiligenthal whose two year old daughter, Olive, died earlier this year. The quote affected me deeply and filled me with courage and peace.
They say motherhood is having part of your heart walk around on the outside, in the elements, wild and open. In my case, part of me is out twirling here on this soil through Elsie and part of me is dancing in heaven through Olive. The day Olive left I sobbed, saying it was all worth it for the 2 years 1 month and 10 days I had her here. It’s worth every one of the million tears, worth the vulnerability, the pain. Loving her is worth it all. What I’d give for my freedoms to be limited again by her, for my body to stretch and swell carrying her, for my sleep to be stunted, another epic Olive breakfast hunger strike and a “you guys have to share with each other or mommy’s gonna go crazy” chat. For another snuggle, another “I yove you”, a belly tickle mid-diaper change. My heart on the outside. But I can’t grasp white knuckle to Elsie for fear of losing. I can’t give way to regret, I can’t control or manipulate and call it safety, I can’t measure my love or calculate my heart to avoid pain. I won’t, because that’s not love. That’s not living. It’s a slow death on earth. Love and fear refuse to coexist, so which one’s hand am I holding? Do it right and you’re at risk. What other choice do we have? That’s being a mother, that’s selflessness, that’s choosing to live fully alive, that’s giving our kids the example they deserve of how to do this life. Being a mom is one of the bravest things that can be done, irrevocably putting your heart on the line. Love is worth that, always. -Kalley Heiligenthal
Her words made me realize that I was trying to grasp white knuckle to this baby, to control and manipulate and call it safety. This baby is not Lucy, this situation is different and these doctors sure aren’t the same ones I had with my first Kell pregnancy. As I did with Nora and Callum, I have to make a conscious effort to remember that I am not in control, I have done my best to choose wise, competent doctors and I have advocated well for this baby. I don’t have to allow fear and trauma from my past rule my life. I can place this baby in God’s hands and trust Him to take care of us both.
The second IUT went much better than the first. Dr. Trevett and I both talked to the anesthesiologist about providing conscious sedation for me during the IUT and he did a great job during the procedure. I felt much more relaxed and at peace the second time. Dr. Trevett sedated and paralyzed the baby and he was completely still during the IUT. The beginning hematocrit was 29 and they got it up to about 45. The next IUT is this coming Friday, June 19.
I feel so thankful for Dr. Trevett and Dr. Moise and the whole team of doctors and nurses who are doing their best to help my baby survive. A week ago I had my last IVIG infusion and our whole family was sad to say goodbye to my home care nurse, Jennifer. Once IUTs start, there is basically no point in continuing the IVIG since the purpose of doing the infusions is to prevent/delay the need for IUTs. Jennifer came every week since my first trimester (sometimes twice a week) to administer my IVIG at home. She was so kind and patient with the kids and she was always an encouragement to me. She even gave us a gift card on her last day so we could buy some things for the baby. Jennifer is just one example of the many people working behind the scenes to keep our baby alive and healthy. These people usually get very little recognition for their contributions, but they are so important. My hematologist, Dr. Franco, my nephrologist who handled my plasmapheresis, Dr. Murphy, the doctors and nurses who surgically placed my permacath and port, the nurses and doctors at the infusion center, the many sonographers who take such care scanning my boy every week, the many people scheduling my treatments, drawing my blood, finding matching donor blood for the baby, monitoring the baby during and after IUTs, my OBs, Dr. Chwe and Dr. Howard, the blood donors who gave their blood in order to help a stranger. There are too many people to list but we are thankful for every one of them. Here is a picture of Jennifer and me on my last day of IVIG:
Please continue praying for our baby boy who has several IUTs ahead of him before delivery. Please pray for Dr. Trevett and all of the people working so hard to help our son stay healthy. Here are a few more pictures from the last couple of weeks:
Josh got to join me for the first IUT (only his second time in the OR out of 11 IUTs total)