Help premature baby Rory's family

I have set up this page to try and help my dear friend Kimberly and her family.  Baby Rory is still in hospital 6 months on with no idea when he will be home and its heartbreaking to see them go through this. Kimberly wrote the below article and although its a little lengthy I would appreciate your time to read it.


Here's a little back story of what myself and my family have been through.....

 

Tuesday 15th June was just like any other day until that evening when my waters broke. I couldnt believe it would be my waters because I was just 24+2 weeks pregnant.

 

Off to the hospital, it was confirmed to be my waters. The next day I got blue lighted to our closest level 3 hospital (our local was just a level 1) I was told I would be here for the foreseeable until it was safe to deliver our baby.

 

Well.... 3 days later I got sepsis and become very poorly, very quickly so they had to deliver to save my life. After lengthy conversations with all people involved, myself and Glenn, going against the doctors advice, our baby was delivered via classical section and me being put to sleep. I was just 24+6 weeks pregnant.

 

He arrived 15+1 weeks early!!! Weighing 600g which is a tin and a half of tomatoes!

Rory was whisked off to NICU. We first met him at 18 hours old! He was soooo tiny but soooo precious! Despite the absolute fear of the unknown, we also couldn't stop smiling that we had become parents again! And what a hell of a ride he has been on to get this far.

At 2 weeks old he got NEC. An infection and inflammation of the bowel where he needed life saving surgery. He was too poorly to go to theatre so they had to operate on the unit which they've only done 3 times in 5 years.

 

Rory lost half his bowel and had a stoma fitted for 11.5 weeks! That was the single most scary day of our lives!

 

Following on from that he has had 3 lumber punctures, 14 blood transfusions, 6 further blood products, countless blood test and canulas, sepsis 4 times, PDA (hole in the heart), chronic lung disease, congregated jaundice, been on 6 different breathing supports, aggressive ROP, injections in his eyes, 3 lots of laser eye surgery, MRSA, enlarged ventricles, concerns about too much fluid around his tiny brain.

 

Despite all this he is still here and still fighting on! He is an absolute warrior! He has shown strength and courage that we have never seen, yet, be the smallest most incredible person ever! We will forever be in awe of him and forever grateful that he has fought so hard to complete our family!

It hasn't been easy on any of us and we also have a 3 year old boy at home and he has been absolutely amazing throughout all of this! He went a week not seeing us or knowing what was happening when I was in hospital. Then having different people look after him so we could go to the hospital, started pre school through out all of this, he has been a absolute star! we just know he will be the best big brother when he finally gets to meet his baby brother as he's not been allowed due to Covid

 

Our latest blow is that Rory is not growing enough. Despite being absolutely well in every other way, including coming off the breathing support, he is just too small for his age. Because he lost half his bowel, he hasn't been able to absorb all the nutrients needed to help him grow. As a result, if he came home and got poorly, he has nothing in reserve to lose any weight and won't be able to catch up as he doesn't have the ability. So he had to have another surgical procedure to have a hickman line inserted into his chest to be on a constant drip called TPN to help him grow. We have no idea how long this is for or when he will come home. Our boy is now 6 months old and I truly believe he still has several months before he will be home. My paid maternity ends in March and due to the expensive life an NICU life leads, we will be truly struggling to pay our bills, meaning I will need to go back to work but I don't even know if my baby will be home! I can be off until June but funds just won't allow that! There is very little help out there for people in our situation and I know we won't be the last! I just wish things were different!