Ultrasound 06.24.10 (31 weeks)

I had another appointment with the specialist this morning. There are still no changes with little Therese (no amniotic fluid). She is growing nicely & weighs 3 lbs 10 oz which is in the 29% percentile for her gestational age. She was moving around while the technician was performing the ultrasound & we could watch her on the screen. We could even see her lips move!

Here is a picture of her little face. The red arrow points to her eye, the blue to her nose. The green arrows point to her mouth. It takes a little imagination, but it really is there.

I have an appointment on Monday for a prenatal MRI. This will tell us for certain whether or not the baby has kidneys. Even if they told us that the kidneys are present, the prognosis is still the same. Without functioning kidneys, Therese cannot produce amniotic fluid & her lungs will not develop. I also have a follow up appointment with my regular OB, Dr Cook, on Tuesday.

I am feeling great, but beginning to have some trouble sleeping. Simply rolling over in bed is such an ordeal! Therese has been very active. Jason & I enjoy her so much. We talk to her, laugh with her & even pray with her. I love to tell Jason what the baby would like to eat "Therese wants a cookie." I really do think she likes cookies, though. As difficult as this is, we are so grateful for the time that we have with her. Every minute is a blessing.

Isn't there anything that they can do?

Jason & I ask ourselves that everyday. It is so frustrating, with all of the technology out there, no one can help our baby! During the first 14 weeks of a normal pregnancy, amniotic fluid consists mainly of water supplied by the mother (which explains why my ultrasounds were normal until 18 weeks). After about 20 weeks, fetal urine makes up most of the fluid. By this time, the baby is able to breathe the fluid into the lungs and to swallow it. The fetal urine is critical to the proper development of the lungs by helping to expand the airways and supplying Proline, a critical amino acid to the lungs. If the lungs are underdeveloped at the time of birth the infant will not be able to breathe air properly and will go into respiratory distress shortly after birth.

There are some cases where a mechanical replacement of amniotic fluid (called an amnioinfusion) was used, however in the majority of BRA or RA babies this procedure has proven unsuccessful. There has not yet been a BRA baby (no kidneys and no ureters) that has been reported to survive more than a few days past birth. With each injection of fluid there is a risk for infection to the mother and the baby, as well as miscarriage. The fluid most often used is sterile saline, which doesn’t contain all of the essential proteins and chemicals for lung development. Also, since the baby would eventually swallow all of the fluid, the procedure would have to be performed frequently (every week or so). Even in the event of successful therapy, the baby could still not develop properly and die at birth or shortly thereafter from other complications.

Follow up appointment

Thursday 06.10.10 (29 weeks & 1 day)
I had another follow up appointment with Dr. Cook this morning. There are still no changes with the baby (very little amniotic fluid). He said that her heartbeat is good & strong and that she is growing nicely. He estimates that she weighs around 4 lbs. Unfortunately she is still breech, a little sideways actually, & if she is still breech at term, he may need to do a C-section to get her out. If he does a C-section this time, then any babies we have after this must be delivered via C-section. Some doctors believe that you should not perform a C-section on a baby that is not expected to survive, however, Dr. Cook feels that trying to deliver Therese in the position that she is in now would be very traumatic, not only for her, but for me as well. We still have plenty of time to decide & there is a small chance that she will turn, although very unlikely due to the lack of fluid. He said that I am doing great. My blood pressure & weight are good. Also, my glucose test from a few weeks ago came back perfect (no gestational diabetes). I go back to see Dr. Cook 2 weeks from today. I also have an appointment with Dr. Gei (my specialist) that day. He will do another ultrasound on the baby.

Ultrasound 05.12.10 (25 weeks)

Here is the most recent ultrasound. It was completed on Wed 05/12 in Dr. Gei's office (the specialist). The top picture is her "profile." You can see her nose in the center of the picture. The top of her head on on your left.

The bottom two pictures are of her entire body. Her rear is in the bottom right corner. Follow the line that goes from there towards the upper left corner. That is the back of her legs (think she's going to have long legs?). It is so amazing!

Dr. Gei told us that she is growing normally & that she is in the 29 percentile for her age (size), which is well within the average range. At the time, she weighed 1.9 lbs. I am thankful that it doesn't look like she is going to be a big baby, especially since she is breech. Jason & I both almost weighed 10 lbs when we were born!

What's happend so far

Most of you know everything up to this point, but for those who don't know the specifics, here they are...

Tuesday March 23, 2010 (almost 18 weeks)
I had a routine follow up appointment with my OB, Dr. Cook. Jason was busy at work & he had been to every appointment so far, so I told him to skip this one. After sitting in the waiting room for over an hour & then the exam room for another 30 minutes, one of the nurses asked if I would be willing to see one of the other doctors since Dr. Cook was so busy. I said "yes, please" & Dr. Boone came in a few minutes later. She examined me, did a quick ultrasound, asked me to get dressed & walked out of the room. One of the nurses came in, escorted me to a conference room & told me Dr. Cook would be in to speak with me. I knew something was up, but thought it couldn't be too serious. I heard the baby's heartbeat when Dr. Boone did the ultrasound & I had just seen Dr. Cook a week & a half earlier & he told us we were going to have a happy, healthy baby.
Dr. Cook came in & told me that there was very little amniotic fluid around the baby. He told me to immediately go to Dr. Palmer, a specialist, so that she could do a better more detailed ultrasound. I asked him if the baby was OK & he said "I think so, but we have to find out." I called Jason & drove to Dr. Palmer's office where he met me. While we waited for an exam room, Dr. Palmer explained what was going on. Basically it had to be one of two things 1) either I was leaking amniotic fluid or 2) the baby was not producing the fluid (amniotic fluid is the baby's urine). I was sure that I had not been leaking fluid, so it seemed to be the baby was not producing fluid. During the ultrasound, Dr. Palmer explained some of the things that could cause this (absence of one or both kidneys and/or bladder, blockage, etc). She thought that she could see both kidneys & the bladder. It also looked as though there was blood flowing to them. She reiterated how tiny the baby was at 18 weeks & the difficulty she was having looking at the organs (the baby's heart was smaller than a nickle).
After the ultrasound, we sat down in Dr. Palmer's office again & she gave us her diagnosis. She started out the conversation by letting us know that this was a long shot & most other doctors would tell her that she was wrong. She believed that there was some sort of blockage or clotting in the placenta. This would prevent the baby from getting the proper fluids & nutrients from me. She said that this was very rare to see this early in pregnancy, but since it looked as though the kidney's were present & functioning (blood was flowing to/from them in the ultrasound). She also told us that most other doctors would tell us that this is not a viable pregnancy. She ordered me on bed rest & prescribed daily Lovenox injections - a blood thinner.

Thursday March 25, 2010
After speaking with Dr. Palmer & hearing her diagnosis, Dr. Cook wanted to send me to another specialist, Dr. Reiter, for another ultrasound. During the ultrasound, Dr. Reiter told us that he could not see any kidneys or bladder. He explained to us why he disagreed with Dr. Palmer's diagnosis of clotting in the placenta - all of the baby's organs would be significantly smaller, as well as the baby's overall size, not just the kidney's & bladder. Our baby was growing a normal rate & seemed to doing just fine other than the lack of fluid. He explained Potter's syndrome - a term that describes the effects of Oligohydramnios (insufficient amniotic fluid) resulting from any number of renal (kidney) abnormalities or a rupturing of the amniotic sac. He said this appeared to be Classic Potter's syndrome, which is the result of bilateral renal agenesis (BRA), or the absence of both kidneys. He told us that due to the lack of fluid, the baby's lungs are compressed and cannot develop properly. The baby would die of respiratory failure within one or two days of delivery, most likely a few minutes to a few hours (if the baby survived delivery). There are no treatment options & there has not yet been a BRA baby that has been reported to survive more than a few days past birth. He told us to be thinking about whether or not we wanted to continue the pregnancy & we could wait a couple of weeks to allow the baby to get bigger & see if anything changed. We were obviously devastated. This diagnosis was completely different from Dr. Palmer's finding only two days earlier.
Dr. Cook called to check on me that night, after speaking with Dr. Reiter. He told me that Dr. Reiter's diagnosis made more sense given all of the evidence. He told me to wait two weeks & he would send me to a different specialist, Dr. Gei for a third opinion. At twenty weeks, the baby would be big enough for them to see all of the organs.

Wednesday April 7, 2010 (20 weeks)
Dr. Gei performed another ultrasound. Afterwards he explained that he had to agree with Dr. Reiter's diagnosis. He showed us that not only were there no kidneys or bladder, but the arteries that branch off from the spine going to the kidneys were absent. He explained our "options" with continuing the pregnancy just as Dr. Reiter had. I told him that we would not be taking any actions to alter this pregnancy. He also told us that some of his other patients that had been given similar news had continued the pregnancy & acted just as they would with any other baby - pictures, grandparents, family & friends at the hospital during delivery. I immediately knew this is what Jason & I wanted for our baby. He assured me that I was in no danger, there were no risks to me & I just needed to continue my prenatal care just as I would for any pregnancy. He also had me discontinue the daily Lovenox injections that Dr. Palmer prescribed (to treat blood clots).

Getting started

Jason & I started this blog to keep our friends & family updated on what is going on with us & the baby. I am 28 weeks as of this past Wednesday (due date Aug 25th). As most of you know, Dr. Cook thinks that the baby is a little girl. We have decided to name her Therese (St Therese of Lisieux) Emma (my grandmother's middle name). However, she has her legs crossed everytime they do an ultrasound, so we may be surprised. As soon as I can get Jason to fix our scanner, I will post some of the ultrasound pics. I am feeling fine & little Therese seems to be happy in her house. She bumps & kicks up a storm, especially around the time we go to bed. My next appt with Dr. Cook is Thursday the 10th. He said that we will continue my prenatal care just as we would with any other pregnancy. I will have also another appt with the specialist, Dr. Gei.