Tag: Baby boy

My Sons Recent surgery number 2 (PUV)

Hey all welcome back to Clayne’s update for his condition Posterior Urethral Valve (PUV).
To catch up with Clayne’s story click these links :  Pregnant and baby boy may have PUV,   PUV confirmed

Clayne is now 10 weeks old as I am writing this.  He has come on leaps and bounds, he is now 59 cm long and weighs 14 lbs, my little chunky monkey.
He recently had his visit with a Nephrologist/paediatrician who said Clayne’s bloods (mainly his creatnine level for his kidneys) are improving but not as fast or as well as they would like however a recent ultrasound scan (USS) showed the outer layers of his kidneys were reducing in size but the inside has stayed enlarged.  This is still worrying but encouraging as well.  The same goes for his bladder.   Clayne has been doing very well still passing urine but was straining at times.
I also learnt that the antibiotic Trimethoprim used for urine infections that Clayne takes at night, will continue until he is potty trained.  Not that he minds I think it has become part of his bed time routine now.

On the 4th September we took a trip to Bristol for Clayne to have a cystoscopy (camera via his penis to look at his bladder and urethra), as well as a circumcision.  This is to reduce the chances of him getting a urine infection in the future when we start to catheterise intermittently.

37602543_1430111807090314_633795275760074752_n.jpg

The Cystoscopy showed that the valve had grown back a small amount, and was removed.  Due to no bleeding he did not need a catheter post surgery.  We were then informed his bladder is looking better but as he was one of the high risk children with PUV he will still need to be monitored and we need to learn to catheterise sooner rather than later.
The benefits of learning catheterisation now is that at at his current age he will grow to find this as a part of his life. Hopefully one day the aim is to wean the amount of times we catheterise so that he won’t need our help and will be able to empty his bladder fully.

We were not prepared to see how sore he would look post circumcision, poor little guy.  The care for this is easy.  Cream twice a day, however my son is a little fidget so nappy changes result in me scrunching up my face and making ouch noises as I don’t want to hurt him.
Being a nurse comes in handy with all these skills, meds and treatment.  But looking after my son is a whole new experience.  I worry so much and I am more involved and aware of what is happening compared to my other half who is learning parts of the anatomy and inner and outer workings of the kidneys and bladder in depth.

We have to go back to Bristol in December for another cystoscopy as the surgeon would like to look without having to remove valves, to be happy and sure they have stopped growing.

Advertisements

10 Points About Being A New Mum

img_0513

Wanted to pop on here and share my experience as a first time mum, especially as the beginning was a rough ride.  We would not change any of the below points ( well maybe more sleep lol) but he makes all the hard work worthwhile.
Refer to my previous posts about my little boys condition.
My Baby pregnancy update – possible concerns – Posterior Urethral Valve???
My baby boy’s journey and diagnosis of Posterior urethral valve confirmed.

1-  You’re going to need LOTS of nappies

I was thinking, I have plenty of nappies a change after every feed about 2-3/3-4 hours will be fine.  I was WRONG, I change my son at least every 2 hours sometimes using 2 nappies depending if he decides to pee half way through a change, meaning I have to throw a nappy on top of him to prevent a human fountain drowning me and flooding the floor.  24 nappies over 24 hours is a good number to work off.

2- Be prepared to get covered in spit up, wee, poo.

I have been covered in it all.  On the second night home he projectile vomited all over me and the bed, at 3 am (Haha that was interesting to clean).
I have been on holiday with him feeding, he has then decided to poo and it has SQUEEZED out the sides of his nappies all down my outfit.  I had to walk out of the clubhouse to the caravan covered in poo in front of EVERYONE!
And the little fountains produced by my son are not so little, haha.  And be prepared for boys to get you when you least expect it.

3- Breast feeding isn’t always easier.

Breast feeding went well for 3 weeks until he wanted 5 oz from me all of a sudden as well as top ups.  I felt like a cow and could not keep up.  Formula had to be introduced otherwise I was going to cry.  I do still pump (when I can magic some time out of no where).

4- Who ever said nap when the baby naps needs to be realistic.

This pretty much sums things up.  There is no way I can nap when it is just me and my boy in the day.  He feeds every two hours but takes at least 30-40 mins to feed.  I then have washing, bottle cleaning to do between and then it is time to start all over again.

5- PJ’s become your best friend.

Amazing things pj’s.  I practically live in mine, hair tied up, no makeup and being comfy.  It is the way to go girls.

6- Trying to put your baby down once asleep is a mission.

Once my boy is asleep trying to lay him down is a tactical mission.  He waits until I lay in bed then he starts crying.  He is only soothed by being walked around the house, then round 2.

7- Using the bathroom becomes a operation.

I can’t shower without Craig being home just incase I am in the middle of washing my hair and he starts crying…… I am not trying to cuddle my son naked and covered in shampoo lol, slip hazard.
And going to the toilet alone,  nope.  Be prepared to never toilet alone again.

8- Ever heard a baby scream as well as cry?  Yep imagine that at 2 am when you’re fast asleep.

I know babies cry and he has an adorable cry but I did not expect my boy to scream.  He has a high pitch scream to start off his cry, always screams well in the night when I am in a deep sleep.  I jump out of bed like a ninja ready t take on anything, just to see his little face staring at me all innocent.

9- Your body will go back to normal.

My one fear was how is my body going to change……
Ladies down below does go back to normal, just don’t look for a couple days (too painful to look anyway), it is not worth the scare.
My stomach has gone flat however is a little saggy with stretch marks…… but easily fixed once I find time to work on my core.
Show off your Tiger stripes ladies.

10- HOT food pffftt whats that.

I swear my boy knows exactly when I am eating, just as I start, he cries …… Maybe one day I will taste some hot food nom nom.

 

Even though all of this I have put appears negative I would not change any of it for the world.  I love my boy so much, he has changed myself and Craig and made us better people.  Yes he is a big learning curve for us but when I look at his gorgeous face I fall in love.  He makes everything above so small compared to our love for him.

37669750_1430112287090266_1078948861961043968_n

My Baby pregnancy update – possible concerns – Posterior Urethral Valve???

Hey all, so this is something new.
As my pregnancy comes to the end I have had a few concerns which I wanted to share to possible meet other mums + dads who’s little ones have the same complications.
As I am writing this I am 37+5 weeks pregnant (13/06/18) and having a little boy, very exciting. We have his room ready, he owns more clothes than I do….. this is not fair, and I am ready for him to come now.
I want to chat to you all today about my journey, and the possibility that there is a possibility our little man has what is called posterior urethral valve – affects the bladder and kidneys (common in 8-10,000 baby boys).

DSC_9313 (2)

Let me introduce you all to Craig and I 🙂 – we have been together for over 9 years now. Our little bubba was not planned and I found out I was 4 weeks pregnant in October 2017, he was a shock to the both of us, however we are so excited to start our little family and look forward to the new learning curve.

This post will be a little long but I have lots of information for those of you interested.

img001.jpg

Above photo

Here was our first scan where baby was exactly 12 weeks old 🙂 I was so glad I kept track of my periods to ensure everything was accurate. At this point nearly all of us on both sides of the family were pretty sure we were having a girl. Craig on the other hand was adamant we were having a little boy – he was right AGAIN 😛 .
At this point we were told we were at low risk of downs syndrome, baby was a good size and very healthy. He was that active that he kept shooting across the screen, the midwife couldn’t keep up.

Below Photo

Here our baby was 18+1 weeks old. We paid for a private scan to see our little ones gender and have a 4D sneaky peak. We are so glad we did this as we were disappointed with the photos from our 20 week scan, we were rushed and just sent away.
This scan was with Window to the womb in Exeter, they were fantastic. They spent their time on us, made sure we were happy, and kept scanning until we had plenty of photos that we were happy with. They also included a video of our scan as well as a teddy with bubba’s heart beat inside.
This photo/scan is my favourite, I mean look at his little nose, adorable. This was when we found out we were having a little boy. He was so active at this scan too and wanted us to see his little man parts before anything else haha.

RYFRTJQSG_Hannah_6

After our 21 week scan we were told we would not be having another one which is normal. At this point everything to do with his bladder and kidneys were normal. As time went on our baby was beginning to measure on the large scale, and appeared to have quite a large growth spurt.
Around 30 weeks I saw a consultant about my heart rate – I used to have SVT which caused my heart to speed up at random times, I had an ablation in 2013 but since being pregnant I was getting palpitations more often, so I was referred to see a consultant. Anyway the appointment went well, however because he was measuring big still she referred me to have a growth scan just to double check it was him that was large.

So following my growth scan at 31+5 weeks the sonographer said the baby appeared to have an enlarged bladder, enlarged kidneys especially his left and that I need to see the consultant again.
We saw the same consultant I had met at 30 weeks the next day who asked for the gender to help with diagnosis, after she did a scan herself she came to a conclusion which was upsetting to me and my other half but gave us all scenarios. As his enlarged kidneys and bladder had not shown at our 20 week scan she was very hopeful that our little man could be treated fast.

DSC_9305.JPG

(Baby shower cake)

So possible diagnosis is that our little boy could have what is called Posterior Urethral Valve which only happens to boys, after some internet research it can affect 8,000-10,000 baby boys.
So basically (holding back my medical jargon), bubba has a small bit of skin that may or may not have grown at the bottom of his bladder preventing him from passing urine (But as there was a lot of fluid around him, the consultant thinks he is passing urine whether it be small amounts or he is holding it in).
Even though the fluid around him is good her concern was that he must be retaining some urine as his bladder was enlarged as well as both kidneys, which means he is backing up.
There is no rush to induce him, his lungs looked perfect which showed the fluid is not backing up too far and getting into his respiratory system, he is swallowing the fluid around hi, and processing it well.
While he is still in me my placenta does most of the work for him therefor his kidneys won’t need to do so much work.

complications – treatment

When bubba is born he will have a few tests in the first 24 hours. These tests include an USS of his abdomen, blood tests and fluid monitoring of how much he passes. The consultant has reassured me that it will not be rushed, I can have a normal labour, skin to skin contact, breast feed and get plenty of cuddles. All I have to do is make sure he gets all these tests before we leave the hospital.

USS – If the Ultra sound scan shows that bubba has this flap of skin in his bladder we will be sent to Bristol straight away with him having a catheter inserted. In Bristol bubba will have to have a cystoscopy under general anaesthetic to burn away the skin – which should hopefully mean it is all over with and he won’t have any more issues, but just to have follow up appointments.
Blood tests –He will have a few sets of bloods taken to check that he is not in Renal failure ( kidney failure) due to his enlarged kidneys, this is the worst scenario. If he does have renal failure he won’t be able to have dialysis until he is 1, and may need a transplant when old enough. Obviously this freaked me out, however being a nurse I understood the complications.
Fluid monitoring –He will be on a strict fluid chart, because if he is passing urine we need to measure exactly how much. We have to monitor to make sure that his bladder has not gone into spasm due to being so enlarged. If his bladder is struggling he will need surgery at some point to take some of his stomach and make it into a bladder for him.

DSC_9308

Throughout this whole process Craig has been amazing, so supportive. He is going to be the best dad. Being a nurse I should be supporting him and explaining information in more depth however I was the one who was an emotional wreck.
Obviously everything is a mystery until our little man is born.
If you would like to know my delivery story I will do an up date post, and I can then tell you all how everything went down.
We are both excited to meet our little boy and cannot wait to see who he looks like, get to see his personality and finally give him some cuddles.

Please comment below if you have been through this, want to know what happens, or have more suggestions for posts on my baby.

xoxo