For those of you that follow me on different social media accounts, you know that my husband and I lost our second son Jackson on September 29, 2015. I kept a journal during the three week downhill spiral of the pregnancy. I am going to backtrack as I rewrite my journal during those three weeks into this blog post. I will also post a second post about the day I gave birth to Jackson.
It’s insane as a mother (and parent) the extremes we would go to for our children. From the instant I found out that I was pregnant (each time), I was in LOVE with my child and get an overwhelming sense to do everything that I can to keep them safe!
This pregnancy has been hard from the beginning. We had a miscarriage two months prior to conceiving this miracle and while I was thrilled, I was also nervous to miscarry again (I don’t think that feeling will ever go away, no matter how many times I am pregnant). You don’t ever get over losing a child no matter when it happens. You get “on” with your life, but you NEVER forget! We miscarried due to me having low progesterone and didn’t catch it in time. The day I found out we were pregnant again, I went to the doctor immediately. We found out that I had low progesterone again but luckily caught it early enough that taking progesterone pills everyday fixed the problem. I was able to stop taking the pills after 12 weeks. I finally felt a little less nervous, but it didn’t fully go away.
At 19 weeks, our lives were turned upside down with the news that our sweet baby had non-immune hydrops fetalis.
Non-immune hydrops fetalis occurs when a disease or medical condition upsets the body's ability to manage fluid. There are three main causes for this type: heart or lung problems, severe anemia (e.g. from thalassemia or infections), and genetic or developmental problems.
The next day, I had the first procedure done called amniocentesis.
Amniocentesis is a prenatal test in which a small amount of amniotic fluid is removed from the sac surrounding the fetus for testing. The sample of amniotic fluid (less than one ounce) is removed through a fine needle inserted into the uterus through the abdomen, under ultrasound guidance. The fluid is then sent to a laboratory for analysis. Different tests can be performed on a sample of amniotic fluid, depending on the genetic risk and indication for the test.
One and a half weeks later, after multiple blood draws and ultrasounds, we had all of the results which all came back normal. Due to rapid blood flow in the baby’s brain, the only thing left was anemia and the only way to find out for sure was through a PUBS procedure.
Percutaneous umbilical cord blood sampling (PUBS) is a diagnostic procedure in which a doctor extracts a sample of fetal blood from the vein in the umbilical cord. This blood can be analyzed to detect chromosomal defects or other abnormalities.
At 21 weeks, we had our first PUBS procedure to confirm that our baby was severely anemic. I walked myself to the operating room and sat on a table. I had a full epidural and a partial spinal block. They gave me numbing medicine and some medicine to help me relax, but I was partially awake during the 2-hour procedure. I could hear the doctors but only truly remember towards the end. I didn’t feel too bad after the first procedure and was able to walk quickly after the numbness wore off from the epidural. I had six needle poke marks on my belly, a shot mark on my back from the spinal block and an epidural port left in my back to be used again the next day.
The next day, we had our 2nd PUBS procedure. Since they left the port in my back, they gave me the epidural in my room before taking me to the operating room. They checked the baby’s heartbeat and felt that it as low and made the doctors nervous which immediately made me scared and cry, but I knew that I had to be strong for my child to give him the best chance! They wheeled me to the OR and realized the epidural wasn’t working on my entire body, just on one side, and then decided to give me a full spinal block as well. They checked the baby’s heart rate and it was back to a good rate to proceed and I made sure they went to tell my husband so that he wouldn’t be as nervous as when they wheeled me out. They put me completely out for this procedure so I don’t remember much during the 2 hours. I remember waking up and being told they couldn’t transfuse due to Jackson’s heart rate dropping at the end. Since I had a full epidural and full spinal block, it took me longer to recover than the day before. My back remained sore all night. I had a few more needle pokes on my stomach, another shot mark on my back and a small hole from where the epidural port was on my back. It was a little rough to sleep that night, but I finally fell asleep and slept knowing that Jackson’s heart rate was good after being checked 3 more times that day.
The next day, we had our 3rd PUBS procedure. I again, walked myself to the OR and sat on the table. I saw all of the blood and platelets ready to go for our precious child and had a good feeling about the day. Since the epidural didn’t work the day before, they only gave me a full spinal block and calm down medicine. I could hear the doctors during the 1 ½ hour procedure but really only remember the end. The spinal block started to wear off at the end and I could feel them sticking my stomach with a giant needle but they said they were almost done and that Jackson was doing great and transfusing him now. So, I didn’t ask for more medicine because they would have needed to stop. I could fully hear them and remember the last, what seemed like 15 or so minutes. I had six more needle poke marks on my stomach and a new shot mark on my back. I was able to walk 4 hours after the procedure and my body remained painfully sore for days after. Having all of that done to my body three days in a row really took a toll on me, more than I thought it would. The crazy part is that I would do it every single day to save my unborn son.
It’s amazing the lengths a mother will go through for their child, and in our case there is no guarantee that our baby will even survive to birth or after. Termination is never an option for us (even thought we were strongly advised by many doctors). I have a stronger doctor on my side and know that God has a plan for our precious child and I will do everything that I can to fulfill His plan. We will have to go through many PUBS procedures before this baby is born and know that he is very sick and if he survives and makes it through birth he will spend a lot of time in the NICU. It makes it even harder going through this while taking care and worrying about our older son. No matter what the outcome, I know as a mother that I’ve done everything possible to save my son. He is a perfect child of God and is already so loved by many!
My loving husband was by my side during this entire process. He never left my side except for one hour to meet our other son and grandma at the playground. There is no way id be able to be strong for Jackson if Jon wasn’t strong for me! I’m sure he feels scared and not sure what to do, but him just being by my side makes all the difference in the world. He’s my rock and no matter what life throws at us, we will remain strong together! I didn’t think I could love him anymore than after getting married and having our first son, but I love him even more after all of this and our faith is stronger through this as well.
Psalm 139 13-16
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
I can do all things through Him who gives me strength.