Breaking Bad News: Part 3

Breaking Bad News: Part 3

photo above by Scott Simon

Below you will see one of the handful of "Baby E Updates" I sent to close friends and family upon learning the news about my abnormal ultrasound. As you will see, I did my best to deliver the news as objectively and clearly as possible, allowed room for questions while reinforcing that we may not know answers, and always ended on a personal and positive note. Looking back, I'm glad I wrote these. There was so much information coming at us from so many directions, and these notes helped me to keep it clear. I was also able to stay very focused on what I wanted as far as a birth plan and I could assume control of at least delivering the information at a time when I felt I had none.

Baby E Update Jan. 7, 2016

We met with one of the neonatologists today to get a sense of what we can expect on delivery day and after. Of course, they are still not ready to give a specific diagnosis until the baby is born and can be assessed. Cristina is getting more frequent ultrasounds to monitor amniotic fluid and lung growth, which as of Monday is still looking good. Assuming the amniotic fluid and lungs are normal through the rest of the pregnancy, Cristina will have a normal labor and delivery.

Since learning that there is a family history of kidney cysts on both sides of our families, we are thinking that this may be hereditary. The only thing that seems to be different from the family history we are aware of, is the time of onset. Those of you who have kidney cysts discovered them later in life. There would have been a clear indication if they were present at birth due to low urine output. Because of the early onset and the fact that both kidneys are compromised, he or she will need close monitoring and assessment after birth.

If Baby is breathing well at birth, they can leave the baby in the room with us until the full assessment, which will be done in the NICU, just down the hall from mommy. Baby E will most likely be treated as a “well” baby, but with the close attention and monitoring of the NICU. We will ask to have as much private time as possible as a family of 3 before the baby is sent to the NICU. Depending on how things go delivery day, we may or may not have visitors in the room after delivery. It will depend on how Cristina is feeling. The NICU is closed so that the doctors can give their full attention to the baby, so it is safe to say you will not be able to view Baby E in the nursery. Because of this, we are thinking we will only have immediate family with us on delivery day. We will let you know for sure as we get closer.

The neonatologist told us to be prepared to have Baby E transferred to Children’s Hospital before we are able to go home with him or her. If we are able to have a vaginal birth, the transfer can happen when Cristina is discharged so mom and baby can be together. There is no telling how long Baby will have to stay at Children’s, we will just have to play by ear.

We are planning to meet with a nephrologist and surgeon at Children’s Hospital before the baby is born so we can be familiar with who we will be working with and who will be monitoring the baby. Because the lungs and amniotic fluid look good so far, we are not expecting surgery or dialysis. However, one of the kidneys does seem to be backed up due to some sort of blockage and they will have to assess whether or not it should be removed at some point or another. If for some reason the remaining kidney loses some function, we may need to put baby on dialysis. Dialysis for babies is taught to parents and done at home. Babies can not tolerate being hooked up to the dialysis machines, so instead they get a catheter. Dialysis is done at night when baby is sleeping, and taken out in the morning. Dialysis is usually a bridge to transplant surgery for babies. Again, there is no indication that we are at this point, but it is something the neonatologist wants us to keep in the back of our minds.

We took our first childbirth class yesterday and were happy to see some familiar faces in the class with us! Chris is learning how to be a good labor “coach” and Cristina is learning how to be nice to Chris when she is having contractions. (wink wink). Our nursery furniture finally arrived, and Cristina can’t wait to get the room all set up. Chris gets to drive to the hospital for our doctor’s appointments to practice the route to the hospital. He is under strict instructions not to ask for any sort of directions while Cristina is in labor. Nor is he allowed to touch the radio. We are very excited for the arrival of Baby E and can’t wait to pinch his or her cute little cheeks. Our most recent photo of Baby E revealed he or she has Cristina’s nose and has “guitar playing” hands. No surprise there. Please pray for Baby E’s health, for our doctors to do the best they can to help our baby, for Cristina to remain peaceful and prepared for baby’s arrival, and for Chris to learn the route to the hospital and not touch the radio on the way there.

Thanks for all of your kind words, love, and support. Love,
Chris, Cristina, and Baby E

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