Home last night after PDA surgery

[clairec81]

Hi everyone
I posted a couple of weeks ago to say that I had just been told that my 11 month old baby girl Erin was to go in immediately for PDA surgery. We had previously been told it had closed but as many of you will remember Erin has had great difficultly gaining weight. After PUSHING and ARGUING with as many docs as I could we finally got referred to Yorkhill Kids Hops in Glasgow and the Cardiologist there said the same 'its closed...but i'll send you for an echo to put your mind at ease'. Well the technician began scanning, went quiet, called for cardiologist and we were told that she had a 'massive' PDA and would need surgery as soon as. They let us wait for my hubby to get back (works on rigs) and by last Tuesday she was admitted and going down to theatre. We were told it was a simple op but that as she was 11 months there would probably be lasting damage to her lungs. Anyway after a 2 hour op (the hardest time of my life) she came out and we saw her. She was groggy and covered in tubes and wires, a sight i hoped never to see again after our neo natal journey. The surgeon said the op was a success but the PDA had been 8mm - huge! We had a few scary days where she was struggling to come off the ventilator and on o2 for a bit longer than hoped but we got home last night. She's done so well! The docs parting words to me were 'you'll probably never fully settle properly with her as you've been telling us all there's been something wrong with her and we've all been saying there's not, but we've finally found it and she's fixed now!' So glad to have her home and hopefully she will thrive now. Thanks for the encouraging posts prior to surgery and just to say trust your instincts as a mum - i feel that they as so much more accurate than any medical persons take on your baby after meeting them for only a few seconds!

 

[25weeker]

Glad to hear the surgery was a success and erin is back home.

 

[lil-star]

Such a lesson to listen to your instincts, so glad shes on the mend

 

[Aidedhoney]

Fantastice news that Erin is home safe and well my son is under the care of Yorkhill Cardiac department(awaiting 2nd OHS) truly a wonderful place x

 

[jj2001]

Hi, My daughter has a large PDA waiting to hear when her op would be...would like to talk to someone that is/has going through the same thing and to also ask if you had problems with poor feeding?

would love to hear from you

many thanks

 

[Foogirl]

Hi, My daughter has a large PDA waiting to hear when her op would be...would like to talk to someone that is/has going through the same thing and to also ask if you had problems with poor feeding?

would love to hear from you

many thanks

I think there were feeding problems, hopefully Claire will pop in soon af fill you in. I saw her and little Erin today and she was doing really well, hopefully your daughter will come through it well too.

 

[clairec81]

Hi, My daughter has a large PDA waiting to hear when her op would be...would like to talk to someone that is/has going through the same thing and to also ask if you had problems with poor feeding?

would love to hear from you

many thanks

Hi there i am happy to chat and give some info - wish someone had been through it when we were as i had loads of questions! I have Erin and my son Liam who is 3 climbing all over me just now so not a great time to go into detail but didn't like to leave a response til tonight. Will come back on once kids are in bed and fill you in!

 

[clairec81]

Hi jj2001, nice to speak to you. Ok thought i'd start with a bit of background, will keep it as brief as i can. Erin was born at 33wks after my waters brocke at 24wks - nightmare pregnancy from start. Anyway she was 3lbs at birth which was small and spet 6 wks in NNICU. It was a fairly uneventful journey compared to many hoever at about 4 wks she was moved back into ICU from the 'going home' room after they discovered she had an infection, scary but fairly common. She responded well to the antibiotics but they informed us at this point that she had a pda (they said it had closed right after birth and its not uncommon to reopen due to infection - something we're not full convinced about now). She go back on track and was discharged with an apt to review the pda at 4 months. At this apt a cardiologist from Yorkhill saw erin and said she had no murmur and the pda was closed, a technician confirmed this with an echo and we were signed off. Erin struggled with weight gain and her feeding i know now was always poor, at the time i only had my son who was full term and a good eater to compare and i just thought it was due to her prematurity. At a routine check with her paed at 9 months he examined her and said she has a pda, we told him she did and it had closed and he said it was def open. She got an apt at yorkhill a few months later when she was 11 1/2 months and at the examination the cardiologist listened and said its closed. I blabbered on about poor weight gain etc and he agreed to an echo to put my mind at ease. The echo showed that not only did she have a pda but that it was 'massive', 8mm to be precise. The said that's why it had gone undetected. We were told she had to have surgery immediately and it was too large for the catheter procedure and she would need surgery. 2 days later she was in. It was a very scary time and i have to say for me worse than neonatal as she was older and understood more. She came through the surgery well, they had fears for her lungs which had had too much strain on them but she was off the ventilator within 2 days. She was out of intersive care and high dependedcy by 4 days and home in 1 week. The first 24 hrs was the worst but she did well. Her weight is improving too .

 

[clairec81]

p.s. my battery was low so didn't get a chance to add that i am happy to answer any questions you have. I know that i has so many about the op itself, recovery, how long potentially in hosp etc. try not to stress too much, easier said than done! I should say that Erin is like a different baby now in so many ways, although very hard to go through i know it was for the best and hopefully what was holding Erin back. Look froward to hearing from you.

 

[jj2001]

Hi thankyou so much for getting back to me i am really worried about the op which I have managed to get a date for the op today be the end of Feb. She is such a happy baby even though she hardly drinks any milk, she does have solids but gets out of breath easily and sweats really bad I would love to be able to hold her in my arms and feed her the only time i can feed her is when she is asleep and in her bouncer ... would like to talk more not sure how to pass my details on here ? also she has poor weight gain having 2 other children i always knew something wasn't right but all i got back off the health visitors was she is fine she is just tiny like you are

 

[clairec81]

no bother to talk more, prob best way is to send you my mob no and e-mail address through a private message. If you are happy to e-mail or text that is. My LO was/is still a very slow gainer, she's been better since op but i got the same story as you, just small (i'm tall but quite slim) so again got - just like you ! Get in touch!