28 Weeks 5 Days

Hi everyone. I decided to start a blog about Baby Eli for our family and friends to get the latest updates. I guess I will start from the beginning and describe our long journey up to this point.

9/14/2010
We found out we were finally pregnant on this day!!

9/15/2010
Our positive results were confirmed by a blood test!

After that, we started having ultrasounds every 2 weeks to check on baby. So far so good. Baby had a little strong heartbeat and was growing right on schedule.

9/30/2009
I started my Lovenox injections. These are blood thinners that I have to inject into my belly everyday. They help prevent blood clots by thinning my blood and I will need to take these everytime that I am pregnant to prevent blood clots in the placenta. (I have 2 mutations for blood clotting disorders, which just means I am at a high risk for getting blood clots even though I have never experienced one before. It is just a precaution.) The needle was much bigger than I expected it to be and the first shot was pretty scary! But I got used to them very quickly and now it is no big deal. Anything to protect the baby! I also have to take prenatal vitamins, extra folic acid, baby aspirin, and Glucophage everyday. The Glucophage is a diabetes medicine that has been shown to help support a pregnancy in the first trimester. So, I only have to take this medicine for the first 12 weeks.

11/10/2009
12 Weeks 2 Days
I had my 1st Trimester Screening this day at Maternal Fetal Medicine at St. V's. They basically are just checking for any abnormalities at this appointment such as down syndrome which consists of a blood test and an ultrasound. Everything came back normal, so we were very happy about that.

12/25/2009
18 Weeks 5 Days
I felt the first kicks of our little baby today!! What a great Christmas present!

12/28/2009
19 Weeks 1 Day
We found out we are having a beautiful baby boy. However, we also received some bad news. My amniotic fluid is very low and the kidneys do not look normal. The possible diagnosis is Bilateral Multicystic Dysplastic Kidney Disease (MCDK). The specialist says that he is very concerned. He tells me to do some more research online to get some more information. So, I spend hours upon hours researching this disease which only scares me more. MCDK is a congenital maldevelopment in which there are several cysts on the kidney/kidneys. Usually this disease is unilateral meaning it affects only one kidney, but in some rare cases it is bilateral which means it affects both kidneys. Most websites state that bilateral MCDK does not support life because the kidney is responsible for producing amniotic fluid which is vital to lung development. The amniotic fluid is actually the baby's urine. The baby then breathes in the urine to develop the lungs. Since my fluid is so low, this can greatly affect the development of his lungs. He can live with one kidney, but obviously he cannot live without both. Also, since my fluid is so low it makes it very difficult to see the kidneys at all on the ultrasound. So, the specialist decides to send us for a Fetal MRI to get a better picture.

1/05/2010
20 Weeks 2 Days
This day we got our Fetal MRI done. Unfortunately this test didn't give us any extra information that we were hoping for. Since the fluid is so low, it also greatly affects the MRI pictures so the visibility of the kidneys is poor.

Now we are referred to the Perinatal Assessment Center at U of M. They want to see if there is some blockage that may be preventing the urine from getting to the kidneys from the bladder.

1/13/2010
21 Weeks 3 Days
U of M Appointment
This appointment was one of the worst ones. They did not see any blockages and the bladder had nothing in it indicating that there is no kidney function in either kidney. There is almost no fluid. The doctor at U of M confirms that the right kidney definitely has MCKD, but he is not 100% sure about the left kidney. They basically give us the option to wait and see what happens (although they pretty much tell us that our baby will not survive) or we can ahead and induce labor now. We are completely devastated. While we are there they have us meet with a Urologist who explains some more details such as the options for kidney dialysis and kidney transplants in the future. He would have to be on dialysis everyday until he is big enough to receive a kidney transplant, which could be until he is 1 or 2 years old. However, they tell us it is unlikely that the baby will make it out of the delivery room. The main concern here is that with no fluid the lungs cannot develop. However, none of these doctors can tell us 100% that our baby will not survive. So, Nick and I go home and we try to process all of this... It is very difficult and very emotional since it took us so long to get to this point and now it could all be taken away from us. We do some more research on MCKD and lung development, since the doctor's never seem to give enough information and of course you never think of the right things to ask while you are there. We decide that there is no possible way that we can induce this pregnancy now. How is that even a decision for us to make? This decision is completely in God's hands at this point.

1/25/2010
23 Weeks 1 Day
We meet again with MFM at St. V's (Dr. Jean Pierre). Of course this is a Catholic hospital, so they do not mention anything about inducing the pregnancy, they only say that we will just keep monitoring the baby and the fluid levels and see what happens. This sounds like the perfect plan to us and completely in line with our faith. Dr. Jean Pierre says that in his opinion the right kidney is definitely not functioning due to the MCKD, but the left kidney is just small at this point. He is not sure if the left kidney has MCKD or not. It is normal in shape and appearance, but it is just a little small. His hope is that the kidney continues to develop and eventually starts working. So, he decides to have me come in for weekly appointments to monitor my fluid level and the kidneys. Also, every 3 weeks for growth checks to make sure everything else is measuring correctly.

2/1/2010
24 Weeks 1 Day
I have reached viability this week meaning that if for some reason the baby had to be delivered now it could be possible for him to survive. If the baby displays any signs of distress from this point forward, an emergency c-section may have to be done. Dr. Jean Pierre decides to give me steroid injections this week. These injections can help fetal lung development, so it is very important to have these in case I were to go into premature labor. These are a one time thing. My fluid levels are still the same at this appointment..

2/8/2010
25 Weeks 1 Day
Fluid level still the same.

2/15/2010
26 Weeks 1 Day
Baby Eli weighs 1 lb 12 oz today and we finally got some good news. The fluid has gone up a tiny tiny bit! Anything at this point is good!

2/22/2010
27 Weeks 1 Day
Fluid has increased again by a tiny tiny bit! Dr. Jean Pierre says this may be due to left kidney function. Also, Baby Eli is practice breathing which means he is preparing to breathe for when he is outside the womb by inhaling and exhaling. So, he has to be breathing in some fluid even if it is not very much. Our situation is still very serious, but at least we have a little glimmer of hope now.

3/1/2010
28 Weeks 1 Day
Unfortunately the fluid did not go up at all since last week. It is still around 1 cm (anything below 5 is considered severely low). Eli is still practice breathing and the ultrasound tech actually showed me his little ribs moving in and out this time. It was so amazing. I'm really upset after this appointment though because I really thought that the fluid was going to continue to go up. I was hoping for a huge jump... An increase in fluid would be the answer to all of our prayers and truly a miracle at this point. It would mean that the left kidney is functioning. This would mean that Eli could survive on one kidney. It would mean that his lungs would have a much greater chance of functioning and he may be able to breathe on his own after birth. Now we just have to keep waiting.

This whole pregnancy has been a waiting game. It is very difficult to not know what is going to happen and to not be able to plan anything. Or maybe it's just the opposite, meaning that we have to plan for everything. We have to plan what we are going to do if things go horribly wrong and we have to plan for the miracle in which God lets us take our baby boy home. Right now I'm holding on to my faith more than even. I know that is the one thing we can count on at this point.

Matthew 8:16-17
16When evening came, many who were demon-possessed were brought to him, and he drove out the spirits with a word and healed all the sick. 17This was to fulfill what was spoken through the prophet Isaiah:
"He took up our infirmities
and carried our diseases."[a]