My baby boy’s journey and diagnosis of Posterior urethral valve confirmed.

Hello and welcome back to part 2 of Clayne’s arrival.  To read about my delivery follow this link- My Labour/Delivery story  🙂
This post is following my little boys journey so far, he is now a month old and was diagnosed with having PUV (Posterior Urethral valve).  I previously made a post about the risks which I will link – My Baby pregnancy update – possible concerns – Posterior Urethral Valve???
I apologise for the photos in this post for some reason they are a little pixelated.

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This photo was taken the night he was born 26/06 Tuesday.  As soon as he was on Neonatal intensive care (NICU) they placed a catheter into his bladder because his abdomen was swollen and he was showing signs of having PUV.  He was put on a small amount of oxygen because his chest x-ray showed that he had a bilateral pneumothorax (air between the lung and chest wall on both sides,  he was showing signs of respiratory(Breathing) distress once born.

Due to all the blood tests and blood pressure checks they asked if they could put in his umbilical cord an arterial line which would measure his blood pressure, and a venous catheter which they would use to take bloods from.  This would reduce the amount of needle punctures.  Of course we agreed, anything to make it easier on our little man.

The following day (Wednesday) they carried out an Ultra sound scan of his abdomen, this showed he had hydronephrosis (too much fluid in his kidneys), again they said it still looked likely that he had PUV but would like to do a more in depth scan called MCUG ( involved dye being put into his bladder to highlight the valve if he had it).  They managed to squeeze him in on the Wednesday and then the condition was confirmed the same day.  Our little boy had PUV and needed to go to Bristol ASAP for surgery.

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Above is Clayne in all his gear ready to be transported to Bristol for his surgery to remove the valve.  It all happened so fast as he ended up travelling there at 1930 that evening.  I still wasn’t discharged and therefor got transferred myself to the same hospital.  This was an emotional time for us both, Craig held himself together for me, but he too was worried for our little boy.

We did not arrive in Bristol until midnight, we quickly saw our little boy and went to bed.
Thursday morning we met with his surgeon and anaesthetist.  I was very emotional, my little boy was not even 2 days old yet and had already been through so much.

The surgery involved them going into his bladder via his penis with a small camera (Cystoscopy) to see how bad the valve was.  According to the surgeon post procedure, the valve was the worst it could be, completely blocking his urethra causing the bladder to swell and develop nodules which will take a long time to relax.
The surgeon removed the valve and replaced the catheter, which would have to stay in for a couple days (was removed on the Monday).  This allowed the swelling to reduce and give our little boy some comfort.  He was so brave and did not need pain relief post.

Because of his enlarged bladder and the strain of it being so tense our little boy will be monitored for many years.  He is at risk of retaining urine, therefor myself and Craig will be learning how to catheterise him for the future.

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Post surgery above.
He has a 1/3 chance of developing kidney disease.  The surgeon said he is a high risk due to the damage the valve has caused.   We will be seeing a renal (Kidney) consultant regularly for blood tests to see if his kidneys are failing, if they are this means he could require a kidney transplant.  However this may not show for a year.

As he gets older and his bladder is relaxing, like I said it can take years…… he may not be able to control his bladder all the time.  This is something we haven’t come across yet/ discussed with the team, because that’s too far in the future.  Therefor there is no plan as of yet.

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The two photos above were on the Friday.  Our little boy was moved from NICU into the high dependency ward.  We were finally allowed to change his nappy, dress him and get cuddles when we wanted.  As you can see he had a lot of attachments, so we were both nervous and it took two to get him out of his cot.   The plan was that the catheter would come out in a couple days but that ended up being Monday.  Bloods to be taken regularly, plus monitoring how much he was passing via the catheter.   The risk was that with the catheter he may lose too much urine causing an imbalance in his electrolytes.

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Over the weekend I was able to breast feed him, get plenty of cuddles and try skin to skin.  But as you can see from the above photo he became very jaundice, therefor on Monday required the UV lights overnight to help.  He was nicknamed my little Simpson baby.

On the Monday they confirmed that we will be going back to Bristol in September for a follow up operation.  The plan is to have another look with the camera to see how his bladder is coping and whether the valve is growing back.  At the same time unfortunately our little boy will be circumcised to reduce the risk of infection in the future.

Finally on the Tuesday night we got to go home.  We are still giving him antibiotics every night to cover any risk of a urine infection.
Clayne has been a huge learning curve for us, and our little boy has been through so much, he will always be our special little man.

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If you want to know more about Clayne’s journey, or you baby has the same condition please follow, like and comment below.  I would like to interact with other parents, or maybe you would like to know more.  If you would like an update on how he is doing in September please comment below. 🙂

 

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8 thoughts on “My baby boy’s journey and diagnosis of Posterior urethral valve confirmed.

Add yours

  1. You are very strong. Don’t worry. It is a daunting time, no doubt. All my prayers and healing vibes for you and you child and your entire family. Don’t lose hope at any point of time.
    Congratulations, you are a great mommy

    Liked by 1 person

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