Yesterday I got the call from Dr. Trevett that I had been anxiously waiting for. I knew right away from the tone of his voice that the results were not good. Unfortunately, our baby is kell positive. Josh’s genes win again. The odds are supposedly 50/50 but Asher, Lucy, Nora and now this baby are all kell positive. We still don’t know whether Liam is or not (I didn’t develop the antibodies until after Asher was born so the boys weren’t in danger.) I was not surprised that the baby was kell positive but I was very disappointed and disheartened. I’ll write some more about what the baby’s kell antigen status means in a minute.
I know you are probably also wanting to know what the baby’s gender is. Since we knew the baby was kell positive we just did a small, family gender reveal with our kids and a few of their cousins at my mom and dad’s house. I made little volcanoes for the boys with baking soda and food coloring and they poured vinegar in to find out whether they’re getting a brother or a sister. Here is the video:
We are having a baby boy! We love our son so much already.
When I first heard the news that I would be having a boy I was completely shocked and to be honest, kind of sad. I really wanted Nora to have a sister on earth and this is definitely our last baby (unless we decide to do foster care one day way down the line.) I wept and grieved deeply for the loss of seeing my daughter with her sister. It reopened my Lucy wound, which is only partially healed to begin with. Obviously, Lucy can never be replaced and I always ache for her; for Liam and Asher’s first baby sister and for Nora’s big sister. But I was hoping that the pain of Nora growing up without a sister would be healed and redeemed here on earth. Now I know that will not happen. I will have to wait until heaven for God to redeem that loss and Nora will grow up with only brothers (which is not a bad thing, it’s just difficult for me because her sister is missing.) I was also worried when I found out I was having a boy because sometimes, boys tend to be more affected by the antibodies than girls. So this boy might have to fight harder to survive than Lucy and Nora, which is scary to think about. I gave myself time to grieve these losses and to get used to the idea of having another boy. Gender disappointment is real and it’s important to grieve and “say goodbye” to the idea of the baby you were expecting/hoping for. That being said, we are not disappointed at all in this baby. We are thrilled to be having another boy and we are desperate to bring him home alive. I remember soon after I found out I was pregnant and I was going through the scenarios in my head, “Kell negative boy? Kell negative girl? Kell positive boy? Or kell positive girl?” and the strong feeling came over me that I really didn’t care in the end. I just loved my baby, whoever he/she was, whatever the blood type, I loved my newest baby completely. That’s the bottom line. I love my son for who he is, testosterone and energy and kell positive blood and whatever else comes with him, I love him for who he is and I’m thankful for this incredible gift from God. I’ve known the baby’s gender for about a month now and at this point, I can’t imagine having a baby girl. I truly am looking forward to having another boy.
Yet again, I am reminded that God is writing this story, not me. He thinks the best thing for us is this little boy which makes me so excited about him. If it were me writing this story I definitely would make this baby kell negative, but God thinks this is best and I trust Him. He has a reason for His decisions. My mom reminded me how many great blessings came out of Nora being kell positive. We learned so much about anti-kell antibodies and the proper treatment and monitoring practices. I’ve been able to help many women and babies with their pregnancies because of everything I went through with Lucy and Nora. We got to live in Houston for five months and meet so many amazing, courageous families who we now call friends. I got to fall in love with some sweet children who are now with Lucy in heaven and I never would have been able to get to know them while they were on earth if Nora had not been kell positive. These people have blessed my life in so many ways. And of course, we got to see a miracle take place right before our very eyes as Nora beat the odds week after week and pulled through again and again. Now she is here, full of life (and full of toddler sass) filling up our world with hope and light.
There are so many good things that came with Nora’s kell positive diagnosis and I look forward to seeing what God is going to do through our little boy.
So, medically speaking, what does it mean now that we know this baby is kell positive? It means my antibodies are definitely attacking him and will continue to attack him until he’s out of the womb. My anti-kell antibodies are specifically designed to destroy my own baby’s kell positive red blood cells. When that happens, the baby will become anemic and will need a blood transfusion in the womb. It is difficult and dangerous to do a blood transfusion on a tiny baby in utero, as you can imagine. The bigger the baby is, the easier it is for the doctors to do the transfusion. The further along baby is, the safer the procedure is because if something goes wrong the doctors can just deliver. If baby boy had to have a blood transfusion right now it would be extremely dangerous since he only weighs a few ounces and isn’t even close to being viable outside of the womb. Lucy had a blood transfusion at 18 weeks and died at 19 weeks because she was losing the battle against my antibodies and she was too young to deliver. If I had been a few weeks further along they would have delivered her and she would have had a chance at life. Thankfully, because of the plasmapheresis and IVIG treatments that I had during my pregnancy with Nora, she did not need her first intrauterine blood transfusion until 24 weeks. We are hoping our boy can make it as far as Nora did before needing a transfusion.
As of right now I am driving to Atlanta (about 3-4 hours one way) every week to do an MCA scan on the baby to check for anemia. If he starts getting close to being anemic we will do scans twice a week and if the scan shows that he is anemic we will go to Houston the next day to be treated by Dr. Moise. Dr. Moise is more experienced treating babies at early gestations for fetal anemia. If the baby gets anemic later on in the pregnancy we will probably stay with Dr. Trevett and let him continue treatment. I am having weekly IVIG infusions in my home with my home care nurse (having one right now as I type, actually.) I will continue these until baby becomes anemic and needs a blood transfusion. The IVIG has side effects that make me feel terrible most of the time on top of pregnancy symptoms so that has been very difficult. With all of my pregnancies I’ve had around the clock morning sickness from about 6 weeks to 20 weeks. I started getting sick at only 4 weeks pregnant with this little guy. The side effects that I struggle with most from the IVIG are nausea, vomiting, migraines, muscle weakness, fatigue and muscle aches (very similar to flu side effects.) I feel extremely weak and fatigued most days and a lot of my mental energy is spent trying not to throw up. I often don’t have the energy to stand up long enough to cook a meal for my family (I try to bring a chair into the kitchen or we end up getting take out, which is normally very rare for us.) Going grocery shopping feels like an impossible feat most weeks, and by the time I’m standing in line to check out I really have to fight not to pass out or throw up while I wait. There is a lot of physical suffering ahead for me and for baby boy and a lot of emotional and financial stress for our whole family. Please pray that our boy survives. All of this is completely worth it for us. He is worth it. None of this is a surprise to us, by the way. We knew before we got pregnant that this would probably be the scenario and we knew what we were signing up for. Our family was on board and our doctors were on board before we even decided to try to get pregnant so that makes us feel incredibly blessed to have such a great support system.
The best news is that baby boy looks healthy so far. Our last appointment was on Monday and baby’s MCA scan showed no anemia so far. There were no signs of hydrops and baby’s heart looked good. He was active as usual and so adorable.
My next scan is on Tuesday, May 9th. They will probably do an in depth ultrasound for the first time to measure baby and check all of the structures of the organs. They will also be doing another MCA scan to check for anemia. Please pray that our son looks healthy and shows no signs of anemia. My little brother is also getting married next week and I REALLY don’t want to miss his wedding. If baby looks anemic on Tuesday I will have to go to Houston and miss my brother’s wedding so pray that baby still looks good. Thanks for supporting us through this tough time and for praying for our baby. Is there any greater gift than knowing other people are praying for my child?
I want to end this post with the verses God gave me for this pregnancy and this child the night after I found out I was pregnant. I struggled throughout the night with anxiety and panicky emotions. Like I mentioned in an earlier post, God brought a verse to my mind and when I heard it and repeated it, all of the voices of fear that had kept me awake for hours were immediately silenced. Right when I heard Dr. Trevett say the words, “kell positive”, God brought these verses to mind again:
Psalm 18:28-36 For it is you who light my lamp; the Lord my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God- His way is perfect; the word of the Lord proves true; He is a shield for all those who take refuge in Him. For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of my salvation, and your right hand supported me, and your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip.
Oh Lord, fill my boy with strength. Support him and be his shield. Keep him safe and use him to do great things for you. Let him be a light and a beacon of hope to others. We entrust our son to you.