Sookie Jane

I am not sure where to start this post. It makes my heart so sad and full of worry just thinking about the future. I am so grateful for my hubs, my mom, and our family and friends who have surrounded us with love and support through the ups and downs the last couple of months. 

At our 22 week ultrasound with the perinatologist, things were looking good for Baby V. We knew she had a cleft lip and potentially a palate too but the only other thing they wanted to "keep an eye on" were her kidneys. One was measuring 4mm which was appropriate for her gestational age but the right one was slightly larger at 6mm. The perinatologist was not overly concerned because she said it could be slightly dilated because of how she was laying. The plan was to monitor the kidneys but other than that, her brain looked great, she was measuring appropriately, the hygroma had resolved, and she was just as active in her little womb as she could be. The 22 week appointment had been our best appointment to date, we were so elated. It had been a bumpy pregnancy but things finally seemed more optimistic and this momma's heart was overjoyed.

At 24 weeks (12.26.12), we went back to the perinatologist's office for an ECHO. They didn't anticipate anything to be wrong with Baby V's heart but cystic hygromas are associated with heart defects so an ECHO was needed just to confirm her little heart was healthy. The ECHO went great and the cardiologist said her heart was "perfect." The hubs and I were so excited but they didn't give us the green card to leave so we sat in the ultrasound room for a few minutes not sure if we were free to go. I wiped the ultrasound jelly off my belly and gave Baby V lots of praise for her healthy heart! As we debated about whether we were just supposed to leave, in walked the ultrasound tech and the perinatologist. The perinatologist decided that he wanted to do his own ultrasound (he was not in the room for the ECHO, just the tech and the cardiologist). He started at the top...her brain looked great, she had cleft lips, her heart was great, but then he stopped. Her kidneys which two weeks prior had measured 4mm and 6mm were now both well over 20mm. He said he gets concerned when the kidneys exceed 10mm because they should be around 4mm so to be 20mm bilaterally was baffling to him. Her bladder was full and the volume of amniotic fluid was sufficient so he said she was not in renal failure yet but he could not determine why or how the kidneys had become more than five times the normal size in just 2 weeks.  We had originally had an MRI of Baby V's brain scheduled for the next day which they were planning to cancel because her brain looked good but rather than cancel, they decided to do a full fetal scan to see if it could be determined why her kidneys were so dilated. The perinatologist anticipated finding a blockage or stenosis but the whole situation was baffling to him. The hubs and I held it together pretty well at this point. Obviously we were concerned but we were trying to stay optimistic until we had more information.

I checked into the radiology department at Children' Mercy at 9:30 on Thursday morning and the scan lasted about 45 minutes then I went back to work. They told me in advance that they would not give us any info immediately after the scan but that the radiologist would read the scan and then update our perinatologist and then he would call us. We were told to not anticipate a call until probably Monday. As I was getting ready to leave work on Thursday, the perinatologist called. All I could do was listen, say ok, and cry. My heart sank.

On Friday, I went to Medical Records at CMH and obtained a copy of the MRI report so that I could read it for myself. It was hard to read knowing that it was not just an MRI from some patient that I was taking care of, but it was my precious baby girl. 

Baby V has a right sided diaphragmatic hernia which allowed her liver and intestines to invade the area which should contain the right lung. She has right sided pulmonary hypoplasia which essentially means that the right lung did not develop because there was no space for it. She has a mediastinal shift which resulted in a small (for gestational age) lung on the left side. Her kidneys were markedly dysplastic. The left measured 4.3cm and the right 2.6cm. Both kidneys contain cystic lesions and minimal renal parenchyma was noted. A small amount of subcutaneous fluid, mostly likely representing hydrops, was also found.

Our perinatologist recommended that we followup with the Fetal Health Team at CMH. Currently, we are awaiting an appointment.

Her future is so unknown, she has so much to overcome. It is more than this momma's heart can bare to think about it all. I lay in bed at night and feel her moving and fight back the tears. She is my baby girl.

Baby V, your momma loves you so very much.