As a testimony to the true grace of God working in our son's life so far, we thought it important to share his story with you all. I've journaled all the emails we've sent to friends and family to update everyone on his progress.
We loved (and still LOVE) being parents to our sweet little daughter Rowan so much that we desperately wanted another baby right away. We hoped if we were blessed with another life it would be soon so our children would be close in age, to grow up with each other. We worked with our doctors & prayed for this child. Soon we were elated by the news of another baby in early February.
We had just assumed that we would have daughters, and we were so excited at the thought of welcoming another little girl into our family. In mid-late May at our routine 18 week anatomy ultrasound, we were stunned and thrilled (plenty of happy tears!) at the news we were expecting a SON!
The day after the ultrasound my OB/GYN called with some concerns about his heart and blood screen.
The doctor said the ultrasound tech could not find all four chambers of the heart, there was an abnormal amount of fluid surrounding it, and my second trimester blood screen came back with an elevated risk of a neural tube defect, such as spina bifida. She referred us to the perinatologist's at Maternal Fetal Medicine.
"We have been experiencing some unexpected difficulties with this pregnancy and wanted to extend to you our request for prayers and moral support.
2 weeks ago we had our 18week anatomy ultrasound (when we found out we were having a BOY!). The doctor called the next day with some concerns regarding an abnormal amount of fluid around the heart and the ultrasound could not get a view of all four chambers of it. Also, my quad screen blood test had come back with an elevated risk of a neural tube defect (such as spina bifida). Our doctor referred us to specialists at Maternal Fetal Medince at the big hospital about 45 minutes away to get a better ultrasound and meet with a perinatologist.
Today we had our level 2 ultrasound and meeting with our perinatologist at Maternal Fetal Medicine in Roanoke and received some new information regarding our son.
According to the scan, one of his kidneys appeared small yet "echogenic" or bright (instead of darker grey- which is normal) and they could not find a second. (This could be due to his unfavorable position for ultrasound viewing or the kidney may be too small). This could be due to a number of things such as a chromosomal defect or some form of kidney disease. Also, the baby has a very low amount of fluid surrounding him. This is of concern because he will need an adequate amount of fluid for his lungs to develop properly, to be able to breathe on his own if he makes it to term and is born alive. It could also lead to low birth weight, other superficial facial defects and clubbed hands and feet. These two issues are more than likely related as the kidneys need to make the urine to supply the amniotic fluid. Though measuring a little small, his HR was a healthy 150.
As of now we have no diagnosis because of suboptimal views of the heart, one kidney & spine due to his positioning and severely low fluid levels, and it is still fairly early on in the pregnancy. We declined the idea of terminating the pregnancy and opted not to go through with an amniocentesis due to the elevated risk of miscarriage because of the already low fluid level. I had some extra blood drawn today for a more accurate screening of potential chromosomal abnormalities and will schedule a fetal echocardiogram at our local hospital per our perinatologist's request. For now we are focused on praying, resting, hydrating, keeping my blood pressure down & counting our many, many blessings (including one healthy, beautiful, rascally daughter!).
There was no mention of the fluid around the heart or neural tube defect risk that had been a concern at our previous ultrasound appointment which warranted our trip to MFM to begin with, nor was there mention of a potential kidney problem at our last ultrasound. So as you can imagine, this came as a shock to us.
From here my care will be shared by my regular OB doctor here in Blacksburg and the high risk OBs at MFM in Roanoke, where I will now most likely deliver as they have a state-of-the-art NICU. I am scheduled to go back to MFM for an ultrasound to check fluid levels next Wednesday and a subsequent ultrasound at MFM on Thursday the 19th to measure any growth.
We remain optimistic, though not naive & we hope and pray to see some improvement in the coming weeks. We have an experienced team of expert doctors and nurses & we place all our trust in the Almighty and know He will provide strength through this process.
We are so grateful for your ongoing prayers and support and will provide updates as they come.
Love
Rob & Riley & Rowan"
We had to meet with a genetic counselor to go through this news after the ultrasound. While the doctor said things "might" improve neonatally (but even so he would more than likely need dialysis/transplantation if he were to survive) but warned us he was not going to give us "false hope". The counselor had given us a few pamphlets and gave us no indication that conditions could improve. She put everything in terms of what WILL happen, such as his lungs would fail at birth if he were to make it that far, that he would be small and disfigured from the compression due to lack of fluid, and asked again if we might consider the option of terminating the pregnancy, which was absolutely not an option for us.
When we got home, I read everything I possibly could to try and make sense of this. The information I came across was not encouraging, and I slipped further and further into despair. I joined online support groups for prenatal loss, mothers of stillborns, and mothers of babies with potter's syndrome (what this looked like to me after my online "research") to try and prepare myself as best I could. I did not share this with Rob. But as the days wore on and when I was alone in the silence the reality of the situation was too much for me; I couldn't keep from crying myself to sleep. Rob was trying to be strong and positive, but it was weighing on him as well, probably more than I will ever know. He said while he was at work later that day when he was feeling immense despair, a strange calm came over him as if God was saying "I am Lord. Do not despair. I am in charge". It was totally out of our control. Instead of losing hope, we decided we were going to pray our hearts out and just completely turn ourselves and our son over to The Lord.
"I'm trying to be strong, but I feel so hopeless... My heart breaks for our son". My sweet, sweet, strong husband grabbed my hand and whispered "We can pray for a miracle" -June 5th 2014
June 11 2014
"Today we had another ultrasound and meeting with our perinatologist at MFM in Roanoke.
According to the scan, his fluid level has improved from 1.9 to 3.4 (yay!); this is still low - out of "severely low" and into "low-end of normal" levels. We were finally able to see him move around and get a few good profile pictures of our handsome son! :)
Dr. Dennis said the increase in fluid is encouraging, but we are a long ways away from being "out of the woods". They still could not find a right kidney and have resigned that it is simply not there. His left kidney is still small and slightly ecogenic (bright, but not cystic as of now), but they were able to see some fluid in his bladder which means his kidney IS functioning some. These kidney problems are completely unrelated to my own.
His HR was 146.
Because of the increased fluid levels, they were able to get better views of the heart and spine. The nuchal fold on the back of his neck measured 11, substantially thicker than the "normal" level of 6. This is of concern because thickness of the nuchal fold in the second trimester is usually comorbid with a heart defect. This furthers the suspicion of a chromosomal cause to these abnormalities.
We are still waiting for our blood work screen (Harmony test) to come back with results of any chromosomal abnormalities. It should be back by the time of our next ultrasound/appointment on the 19th. Should anything come back positive on the screen, we should be able to go ahead with an amniocentesis (given the fluid level stabilizes or increases in the coming weeks) to get an exact diagnosis.
My fetal echocardiogram is scheduled for June 26th; we will learn more about potential heart issues after that.
Please keep these dates on your calendars to remember to pray a little extra.
Our current diagnoses are: oligohydramnios (low fluid) & unilateral renal agenesis (missing one kidney).
Overall, while we did see improvements, Dr Dennis is still very concerned for his health saying he's "less pessimistic" than last week, but wouldn't necessarily say he's optimistic. He said we are better than last week, that every week closer to week 26 (viable outside the womb) is a victory, and that I should continue to rest and hydrate as much as possible.
(I am 21weeks 5 days along today)
There is no prognosis, favorable or poor, at this time because the kidney function could go either way. There are no means to intervene to improve functionality. It is completely in God's hands. Only God really knows what is going on in there and what his future holds, and He will provide the strength and grace on which we so desperately rely.
Whatever the outcome, we are tremendously blessed by this little life and incredibly grateful for him. It's a privilege to be his parents.
For now we will continue praying, drinking lots of water, preparing for our move this weekend, and gearing up to celebrate Rowan's 1st birthday next week :)
Thank you all so much for your many prayers. Thank you for reaching out to us and offering your comforting words, cards, Mass intentions, etc. ((Thanks especially to Eileen, who took great care of Rowan today while we went to the Hospital.)) We are so comforted by your support!
You are more than welcome to share his story with others- the more prayers, the better :)
We will continue to share updates as they come, if you so wish to be updated.
XO
Rob Riley & Rowan
1 Samuel 1:27
Exodus 14:14"
We saw God working in these small improvements and while the reality of his poor kidney function and still very low fluid was weighing on our hearts, we were hopeful and encouraged.
June 19 2014
"Today we had another ultrasound/meeting at Maternal Fetal Medicine.
According to the scan his fluid increased from 3.4 to 3.6 (yay!) Though we'd like to see it around 5/6/7 this should cover his basic needs for growth and development (given the levels stabilize or increase) as it is within normal range.
His left kidney is still small, about half the size of what it should be- but it is working very hard to supply what he needs and we are thankful for that! Today they did see something that looked like it MIGHT be a right kidney but they can't say for sure- even so, they confidently said that if it is, in fact, a kidney it is non-functioning.
Also, our Harmony blood test came back negative for all chromosomal abnormalities. (Yay!)
His HR was a healthy 153. I am 22w6d along- another week, another victory!
The doctor says he is pleased with where we are at right now- just need to keep an eye on that little kidney and his fluid levels. This next month, however, is the critical period for lung development - so his fluid levels are especially important in the coming weeks.
Thank you, from the bottom of our hearts, for all your prayers!!! They ARE working! God listens to our hearts and has made this little man a fighter! Please keep praying for progress & growth of his kidney that will function sufficiently for him in the long term.
We have our fetal echocardiogram on the 26th and another MFM appointment on July 8th. Please keep him in your prayers especially on those dates.
For now we are continuing to rest, hydrate, pray, play with our silly 1 YEAR OLD daughter and celebrate every little kick and movement from our son.
We are so thankful for your support <3 please feel free to share his story with others; the more prayers, the better :)
XO
Rob Riley & Rowan
Isaiah 46:4
Joshua 19
1 Chronicles 16:8
After this we received a call from our Priest who invited us to the Church to have a special blessing done for our son. It was just us, Father Remi, and a few church staff members (who knew us through my work at the Parish pre-school before, during, and after my pregnancy with Rowan) who wanted to join us in prayer. We were also given two prayer shawls made by the church ladies who meet to pray while knitting and give the shawls to families going through difficult times. It is so comforting! I take them with me to appointments and even just have them on my lap while I'm reading at night.
June 26 2014
"Today we had the fetal echocardiogram at the pediatric cardiologist's office in Roanoke. The doctor said his little heart looks GREAT. His HR was 143 and there were no apparent major heart defects (yay!) so we can cross that worry off our list.
Baby Boy was very wiggly and even completely changed his positioning through the course of the ultrasound; but they were able to see everything they needed and all arteries, blood flows, and structures look normal. They did not measure fluid levels or anything like that- just specifically studied his heart.
We're not sure at this point why his nuchal fold is substantially thicker than normal after learning our chromosomal blood screen came back clear and his heart is in good condition because these were the two major concerns upon getting that measurement (fold measured 11.7, 6 is normal). Hopefully his health concerns are isolated to the kidney and we can focus all our prayers on hoping his little kidney grows into a super kidney and functions sufficiently for him neonatally, and God-willing, in the long term.
We cannot tell you how much your ongoing support and prayers mean to us. Thank you to those who continue to reach out and check in on him and his progress, who call or text the morning of appointments, who have sent cards and good wishes, and all who have been united with us in prayer. We know all of you are so busy; it is a huge source of comfort to know that you're keeping him in your thoughts and prayers. Yesterday we had a special blessing done at the Church and had a few fellow parishioners pray with us for the health and well-being of Baby Boy. We are so grateful we can openly pray for our son and others, and pray that the Christians around the world who cannot pray freely will one day be free to do so.
Please also consider praying for other families going through complicated pregnancies or families with adverse diagnoses for their infants. We see so many families walk through the doors of the MFM building and many of their babies are in much worse shape than ours. Remember God is good!
Our next MFM appointment is July 8th. Please keep him in your prayers especially on that date."
July 8 2014
"Today we had our ultrasound/appointment with the perinatologist at MFM in Roanoke.
We are thrilled to share the encouraging news that the baby's fluid has risen from 3.6 to a whopping 13.5!!!!!! (Less than 2 is "severe oligohydramnios" -Anything from 5-25 is normal). So his fluid isn't even a little low! I had the same sonographer I had last time and she was amazed at this little (& very very wiggly) boy and how much better his fluid was. We could see him opening his mouth and swallowing the fluid - practicing breathing- and that was a huge relief!
We saw Dr Dennis' partner, Dr Durica, and she could offer NO explanation for this dramatic improvement- but was thrilled that the fluid was well within normal range. They did see the left kidney again- and the doctor said it was not, in fact, small OR bright, and she guessed that maybe it had appeared small in previous ultrasounds because the fluid was so low that they could not get a good look at it. They also thought they "might" have seen the right kidney in a lower than normal position (maybe a horseshoe or pelvic kidney), but the picture was not clear enough for the doctor to say for sure.
We are going to schedule an MRI to get a better look and continue to have regular ultrasounds to track the development of his "renal tissue" (kidneys). As he gets bigger we should get a clearer answer as to if he has one or two kidneys, how well they are functioning, and where exactly they are located.
While we are very VERY pleased with this amazing and truly miraculous improvement, the kidneys are very fickle organs. We hope and pray that the kidney(s) continue to improve and the fluid level stays well within normal range.
All of his other measurements were right on track: heart, head, stomach, bladder, legs, and we're pretty sure we counted all 10 fingers. He weighs 1 pound 11 ounces and is really REALLY cute! (See attached pics) I'm 25 weeks 4 days along.
Thank you all for your continued prayers and support. We know they are working! We will continue to provide updates as they come, and hopefully it is all good news!
Love,
Rob Riley & Rowan
Hebrews 6:19
James 4:6
2 Timothy 4:17
Psalm 147:11
Isaiah 46:4
Job 23:10
Joshua 19
1 Chronicles 16:8
1 Samuel 1:27
Exodus 14:14"
We are not out of the woods yet, but God is providing for our son in ways nobody expected! Please continue to keep him in your prayers. <3
