As you know, with most twin pregnancies, there is always risk of complications.
About a month ago we went in to see my regular OBGYN, Dr. Hudson, for my routine monthly check up. I was not scheduled at this date to have an ultrasound, but for some reason he felt like we needed to have one. That day, we discovered that Harper, our little girl, was not growing at the same rate as Henry, our son. This is often common in twins, however, our doctor felt like we needed to err on the side of caution and referred us to a perinatalogist, Dr. Hoeldtke, in Jackson, TN. This doctor specializes in high risk pregnancies. During our visit to this specialist, Dr. Hoeldtke confirmed that Harper indeed had fetal growth restriction or IUGR. At that time, he wasn’t sure what the cause was, but he said all we could do was monitor and wait.
During this same visit, Dr. Hoeldkte noticed that Henry’s heart was displaced, ie not where it should be located in his chest. Nothing too major, but it caused him to take a deeper look at the ultrasound. After about an hour of measurements and two fetal EKG’s, Dr. Hoeldke diagnosed Henry with a CPAM or CCAM. This stands for Congenital Cystic Adenomatoid Malformation. Basically, this is a tumor that has developed in his right chest cavity. This is very rare, occurring in maybe 1 out of every 5000 pregnancies. In 98 percent of the cases, the tumors are benign. However, because of it’s location, there is concern for his lung development. Dr. Hoeldtke gave us three scenarios or outcomes that will happen after receiving this type of diagnosis. The first scenario, which is what we are praying for, is that the tumor begins to shrink and completely go away. He said that this occurs in 20 percent of all cases. The second scenario is that the size of the tumor stays the same. If this occurs, Henry would need immediate surgery upon delivery to remove the mass. The third outcome would be that the tumor continues to grow. In this case, which is the worst, the tumor, because of its location and size, would put stress on the heart and more than likely result in fetal death.
We went today for our two-week follow up with Dr. Hoeldtke. Harper is growing, but not in the way that he would like to see. She’s about half the size of Henry. During today’s ultrasound, he noticed that the blood flow through her umbilical cord seemed to be restricted. Harper and Henry have two separate placentas, and the doctor seems to think that maybe Harper’s is not/did not attach to the uterine wall the way it should have, thus causing her limited growth. He said this caused concern because she could go into fetal distress or stop growing. He said if this happens, they would have to take her immediately, thus taking Henry as well.
Looking at Henry today, we saw that the mass has basically stayed the same. This is not good, but it certainly is not as bad as it could be. However, the doctor did see that Henry is beginning to have more amniotic fluid in his sac. He said this was an early sign of preterm labor.
Because of today’s finding, Dr. Hoeldtke decided to go ahead and refer me to the Fetal Center that is affiliated with The Med and Le Bonheur Children’s Hospital in Memphis. He said that in his opinion, Henry and Harper will need to be born there so that Henry will be able to receive surgery upon his arrival. He said that we are just in a “waiting game from hell!” We really won’t know what the plan of action is going to be because both babies have their very own set of unique problems that have nothing to do with each other. Essentially, we are going to have to take it a week at a time. Out of concern for the risk of me going in to preterm labor, even in the next few weeks, he went ahead and started me on a series of corticosteroid injections which will hopefully aid in their lung maturity. I am currently waiting to hear from the doctor’s office in Memphis regarding our appointment either this week or next week.
We apologize for not saying anything sooner. It is really hard for us to talk about it! Plus, we needed time to process everything and do a little research of our own. We also wanted to wait and give it time and see if anything changed.
Right now, there is NOTHING we can do but pray. We know that God is in control of this situation. He blessed us with these two little miracle babies when I was told my chances of getting pregnant were very slim. God doesn’t work with statistics and he certainly is bigger than any diagnosis. We know that God is going to walk with us every step of this journey, but we really need prayer. We are praying that he will completely heal our babies, but we also know that he has a plan that is far greater than our own. We know that whatever the outcome, God is good. Mark and I are also praying for peace during this “waiting game.” We are trying to keep ourselves busy by finishing the nursery and completing projects around the house in anticipation of bringing them BOTH home. We are upset and scared, but we have also been filled with so much hope.