Matthew's Pictures

March 20, 2009

More PUV Babies- Prayers Needed

Things are going okay for me. I take it day by day, praising the Lord each day for my beautiful angel baby. Abbie and Raleigh keep my mind occupied and busy, but nothing can ever fill the void that is missing in my life.

Great thanks to all of my friends and family out there who have been so supportive during this time. Thank you to all of the courageous moms who lost their precious babies who have been there for me as well.

I have two moms who need special prayers. Both of their babies have been diagnosed with PUV like Matthew, and the future shows babies who likely will not make it. Jonah's mom, Kelly, went in for a c-section just a few hours ago, so please pray that she is doing well, and that she gets lots of time with her baby boy. Here is her link...http://hausercarlson.blogspot.com/2009/03/jonahs-birth-day.html

Also, Stephanee is about 26 weeks pregnant with Vayden, also a PUV baby. She has a bit more time left, and even though things don't look so good right now, the good Lord can make things happen. Here is her link: http://vaydenjamesstewart.blogspot.com/

9 comments:

Stephanie said...

Thank you Jenn, for sending a special prayer request for Vayden. It means so much to me. I hope all is well with you and I still find your strength so beautiful.

Sheila said...

Oh, that was so beautiful ! You and your son & daughter & hubby, such lovely precious young people, serving the Lord !!
Just sat here balling my eyes out, saying prayer for you !
I lost my beloved hubby/best-friend, 23 months ago & I've never walked down such a difficult journey as this.
You may not always hear everyones thanks, but this story means much to me, just knowing I'm not alone, in this world of ours !
God Bless you all richly & I know, you'll be forever in His loving watch !!

Rebecca R Harding said...

I must say that our great God is amazing,...I was doing some online research about PUV when I happened upon your blog and just knew I had to find a way to contact you - commenting was the only option I had. My name is Rebecca, I'm 21 and currently residing in the High Risk Perinatal unit of our hospital here in Georgia. I've been here over a month now on bed rest after my ultrasound check up at 31 weeks revealed I had no amniotic fluid left to sustain our baby boy. You see, our currently unborn son, Ephraim Josiah, was diagnosed with PUV at 15 weeks. We were told his bladder was too distended to hope his prognosis was hopeful. We still had a couple centimeters of fluid left but doctors had no hope he'd survive beyond 20 weeks. I had two cystocentesis' preformed during that week and the testing of his bladder fluid revealed only good news,...his kidneys hadn't been affected and he appeared healthy on every other level. We talked with doctor upon doctor, had a bazillion ultrasounds done and prayed like you wouldn't believe. We knew our son belonged first and foremost to Jesus and so we offered up the outcome to the only true author of life. No doctor, no diagnoses would claim our son's life, God had his days numbered according to His plan, not any human physician's opinion. A couple weeks later my fluid level more than doubled with no explanation, E's bladder blockage was still visible, it was only by God's grace. Then shortly thereafter we were spoken to about the risks of the stinting/surgical procedure because by the look of things, even though my fluid level was back up, his blockage was still severely threatening his life. They pushed us to get genetic testing done and when we refused one of our doctors told us he wouldn't treat me or my son not knowing if he was even 'worth' the risk. We were encouraged by that same doctor to consider terminating the pregnancy,...obviously I told said doctor all about the Great Physician and gently explained to him regardless of the risks - we were trusting God with the outcome. I think it was around a week later that we discovered his blockage had just disappeared. There was barely even a trace of the former distention and the ureters and kidneys and bladder wall no longer looked inflammed. From that point on (about 21ish weeks) through 31 weeks everything was perfect and we were (Still are) praising God for our miracles! I went in April 7th for my routine ultrasound check up when our perinatal doctor saw I went from having perfect fluid levels to almost nothing. After checking to see if my water had broken or if I was leaking (They couldn't confirm it) I was admitted into the hospital under observation and treatment for 2 days. They pushed fluids through an IV to see if Ephraim could urinate and increase the amnio fluid, they injected me with steroids to help lung development because they knew preterm delivery was their only option and when nothing worked they had only to assume Ephraim's kidneys had failed. They held off on the emergency c-section knowing he was too small and too young to be put on dialysis or survive outside the womb with the potential after effects of having had a PUV blockage so I've been here for 4 and a half weeks now having ridden the roller coaster ride of emotions. Our son is proving to be a fighter but the doctors have already prepared us for the worst case outcome. With no kidney function he may not be able to survive long enough on dialysis to obtain a kidney transplant. We're still praying for another miracle that we know God can preform, however, we also know God's ways are not ours as He said in Isaiah 55. So, when I read your blog after happening upon it this afternoon I just had to tell you that I'm praying for you and your family. My husband and I can see and understand the pain of losing your son. For us, Ephraim is our first. We'll celebrate his entrance into our world this month (We deliver sometime in the next two weeks) as we celebrate our very first wedding anniversary as well. May God continue to use your story for His plans and purposes. He's already used you to encourage me beyond what you will ever know! I'd love to keep corresponding with you, if you wouldn't mind, I have Facebook and not blogspot (Look me up as Rebecca Ryan Harding)but you can also email me if you like at loved_without_condition06@hotmail.com. Thanks for hanging on to our Rock,...He truly *is* our firm foundation through any storm even one as devistating as losing a son! He too, has been there. May the peace of Christ surround you and your family!

Anonymous said...

Hi, just doing research on how effective the RNT trial surgery is.
unfortunately only few are getting this.

My first scan at 12 wks+5 days revealed my baby bladder was slightly distended I was asked to go back in 2 weeks time for another scan.

My second scan at 14 wks+5 days the urinary bladder appear well distended and was told this can be PUV, I was asked to go back the following week to see the doctor.

At 15 wks+5days I was told this is a life threatening condition and my unborn baby will die as the kidneys are showing signs of echogenic. I was give 3 options the obvious of termination was not a choice for us and to enter our self for the PLUTO trail however so asked for a second option, we were referred to see a professor at st Georges in London the following day.
at 15wks+6 days we were told that our can survive in the womb as the placenta is doing all the work however when he is born he will die without a doubt, I could not help but to cry my heart out.
we were also told about the trail and if we entered its a 50/50 chance of survival and if my baby does make it he will be extremely ill with on going surgery and a short life span possibly up to the age of 2 years.

As parents we understand the most likely outcome is death from renal and lung failure. we are not going to consider termination of a child but will go back next week Tuesday to sign the consent forms to entered into the trial.
PLUTO will give us an instant decision on the day weather we can have the surgery or not.
If we are not granted the surgery I have decided to give birth to my son knowing he is going to die but I want the opportunity to see his face and hold him in my arms.
I’m am counting on them to save my baby life.
I’m only 22 and today I am 4 mth pregnant, and don’t have the mental or psychical wellbeing to deal with this but I think were doing well.
I really here from anyone who had this surgery I think it will help me to understand more clearly.

Habibah(LONDON)

Santino's family said...

I wanted to thank you for sharing your story it has helped me greatly in dealing with our similar pregnancy. I am 33 wks pregnant and our son has been diagnosed with PUV. He is due July 28, but I have feeling he will be arriving sooner. We are remaining hopeful that the lil guys lungs will be okay but only our savior knows. You were inquiring for helpful hints in finding time with the Lord. I'm currently doing a bible study by Catherine Martin called "A Heart That Dances". It is really helping me to relax and enjoy this time I'm having with Santino. It is a online bible study the link is http://cathscommunity.com/category/aheartthatdances/. You can order a book from this website. I hope it works out for you. If you are like me I need someone to hold me accountable and Debbie will (instructor). You and your family are in my prayers.

Yvette

Vickie said...

hello my son charlie was diagnosed at 20 weeks gest he had blockages. the doctors would not tell me it definaly was puv but they said it could be we will have to wait for post mortem results. anyways because of blockages he was still born at 30 weeks gest on 1st april 2010. things were looking very good for them 10 weeks the doctors kept tellin us his kidneys may never be damaged. then at 30 weeks the doctors told us all the fluid had gone and there was nothing they could do. they advised intervention of the pregnancy. the only thing that keeps me going is that as least hes not suffering anymore.

irene said...
This comment has been removed by the author.
Anonymous said...

I am so sorry to hear of your loss! My baby like yours was diagnosed with PUV at 18 weeks. I had already been blessed with two healthy boys and was told to abort this one due to poor prognosis. Thank God for Dr Kennedy at LPCH. He calmed me down and helped me get through the next couple of months. My son Alexander was induced at 31 weeks due to his kidneys completely filled with fluid. I work in the main operating room at this same hospital and see the babies with this problem. I was scared to death!
I was prepared for the worst and got the best. My son had surgery 12hours after birth to remove the valve he spent 7 days in the icu and is now perfect with no signs Of kidney damage. His bladder is still very large and we were told he would have problems potty training. He trained himself at 2 1/2 and is my heart.
Alex is now 4 and I remember how lucky I am to have him everyday! I don't even know how to put into words my sorrow for your loss. I just would like to thank you for sharing your story I just would like for the families new to this condition that miracles do happen and to keep positive
I wish you and your family the best of life.
Deann

pray for my baby said...

first let me say im truely sorry for yr lost of yr beautiful baby boy an im so happy i found something on this internate to relate to my sittuation. Lord im so scared an stessed out this is my forth pregnancie ive recently had a tubal last year back in january i have to healty little boys. Im currently 14 weeks an scared to death my baby boy ....who is to earlie to tell gender is in fact a boy by the drs educated guess....but his little bladder is so enlargeed hes not expected to live they gave me a 1% chance of surviveing so terminate my kicking moveing baby inside of that growing still ..im so confused an hurt he so helpless ...an he will most likely die at birth ..somebody anybody let me know its going to be ok please god help me