So I’m trying to really quickly and briefly fill you in on what happened before I started writing blogs about Jaxon when he was 12 weeks old. But there’s really nothing brief about his medical issues so I’ll do the best I can.
First things first, going way back to when he was born. As you know from the pregnancy blog, he was born healthy despite pregnancy complications. We had maybe 24-48 hours before the rollercoaster started.
How do I make this brief? After one night home between the Jaundice and a hernia, we then got one more night at home before I rushed him to A&E, holding his head up in his car seat with fear coursing through my veins.
So following on from My first week as a mother was not what I expected it to be , we arrived at A&E with my floppy, unresponsive baby. Naturally he woke and became responsive once we were put in a room with those bright lights (I learnt very quickly that babies have a funny way of managing to make you look like a crazy liar). That being said, we were seen instantly and despite him having perked up, the doctors could see something wasn’t quite right too. I gave them his history and the blood results from Leicester. I was faced with “he had Jaundice?” again. To explain this better than I can now, 4+ months later, I have a note I wrote just six days after this incident…
That covers our first 6 days with Jaxon as an inpatient. Despite being in hospital, I was relieved to be surrounded by doctors that wanted to give us answers. From the doctor in A&E that reassured me we would not be sent home until i had answers, to the doctors on the ward that ordered every test to check everything. I knew they were serious when the scans were done out of hours. I remember carrying him through the X-ray department with no receptionists, no patients, the lights weren’t even on. It was scary. But I was grateful to have such amazing people pushing for my sons health.
The disappointment came when every test that was done came back with some kind of abnormality or problem. Jaxons blood tests showed abnormal liver function, his kidney scan showed severe reflux and his heart scan showed a small VSD (a small hole in his heart). As each test came back my heart feared the worst for the future. I didn’t know much about the liver function but I’d worked on a renal ward and seen first hand how kidney failure impacted quality of life. My baby was a week old and I was scared for the life he had ahead of him.
The virus that came back in Jaxons urine was Cytomegalovirus (CMV), remember the one I mentioned being tested for in Pregnancy was not a breeze.., the one that came back negative?! Mind. Blown. It was pure bad luck. The virus is just a type of common cold that we all will have had or will have at some point in life, and we won’t know because we would just call it a cold. However, if you pick this up during pregnancy and it passes on to your unborn child, it can cause serious medical problems. It was believed this was causing Jaxons liver dysfunction. It was unknown whether the kidney reflux was caused by the virus or not, but the hole in his heart was not. How unlucky could my poor baby be? That being said, although it had only been a couple of days, with all of the tests coming back with abnormalities, the doctors had sent a genetic screen for a Alagille Syndrome which is a complex disorder that would require lifelong medication. Therefore, at this point CMV seemed like a relief as the liver dysfunction was treatable and with the treatment further damage from the virus would be prevented.
Then, Jaxon was given a head ultrasound which revealed two cysts on his brain. These were believe to be caused by the CMV. I was terrified even further.
On the 6th September I wrote “Jaxon – I adore him but he terrifies me.. For the first week or so I kept quite strong, like, I could handle whatever they said about him, but as the days have gone on and we’re in week two of bad results I feel broken and helpless.. His health was all I prayed for.. He doesn’t deserve this.. Cysts on the brain are what broke me. Learning difficulties. It’s so hard to see a positive future”.
With the cysts on the brain I received mixed messages from different doctors. The first doctor didn’t really make a big deal of it, he said they were dormant and he sort of just told us that we would have to wait and see how he developed. Another day I asked a doctor why he was floppy and when that would get better with regards to the medication treating his CMV and they told me “it won’t, thats because of the cysts on his brain”. Sorry what?!! This completely threw me. Every day I saw doctors and I asked a million questions, the fact she said this and I was speechless, said so much. However, after mulling it over I had a healthcare assistant come into me crying and tell me, look at him; he’s feeding, he’s alert, he can hear, he can see. He’s good! This breakdown of how he was, really helped. Then another night a student nurse came in. She shared with me that she had a 16 year old son who had cysts on his brain when he was born and he was now perfectly fine and normal. These are the people that got me through, these fuelled my hope that I was living for.
On the 11th September we went to register Jaxon and got back to be told we needed to pack up as we were being transferred to Birmingham Children’s Hospital within the hour. The liver specialists wanted him there. I packed everything up, got a car load sent home and prepared to be transferred to another city (better believe having been there three weeks, I had moved in. the cleaner hated me as there wasn’t an inch of space in our little cubicle!).
Before sending him they took one more set of bloods. Jaxons sodium and potassium levels came back low making him unsafe to transfer. Another health problem?! After everything, this was another addition, a new problem, a new concern. How was this possible?! This hurt mostly because for two weeks we had been battling with him losing weight, two minutes prior to these blood results Jaxon had been weighed and I had been overjoyed to hear he was back at his birth weight, a glimpse of happiness. I didn’t even have the time to text and update my mum with the good news before a doctor came in with these blood results which could be life threatening. Being a nurse gave me a scarier insight than others may see from this news. To one person a doctor saying some electrolytes in the blood are low and that they’re going to medicate to replace them is like, oh okay. To me, low sodium is dangerous and can cause seizures, coma and even death. Low potassium has me thinking “that can cause a heart attack”. Jaxon was treated with potassium and sodium supplements orally. His potassium returned to normal and he no longer required the supplement but his sodium dropped every time supplements were stopped.
During our six week stay, we also had feeding problems. I went into hospital breastfeeding but he had to have a nasogastric tube put down (from his nose into his stomach) as he would sleep 247 due to the liver problems making it difficult to feed him. I will write a separate post on this as its a whole other story and I think people with tube fed babies will benefit from that journey on its own.
Jaxon also had two lumbar punctures whilst an inpatient and precautionary treatment for sepsis (multi organ failure) as well as urinary tract infections.
For all these weeks, Jaxon still had his inguinal hernia that was supposed to be operated on within two weeks of it being diagnosed. Jaxon was so unwell he was not fit to operate on. Then on the 18th September he had his operation. I have to say, that was possibly the least worried I’d been about him. A common operation performed on my baby that was well enough to be operated on. The fact he was well enough to be operated on filled me with relief. I was right, he was so unphased and his scar was barely visible.
Towards the end of our stay, we were given day leave which allowed me to take Jaxon into town for the first time and then home leave for a weekend. It was like being an inmate given parole! The first day I took him out he was a month old and I hadn’t expected the nerves that took over me, I was so used to having nurses and doctors around me, I hadn’t had my baby to myself! But it prepared me for what was to come..
Jaxon was discharged 5th October!
To summarise, Jaxon spent the first 7 weeks of his life in hospital with grade 4 kidney reflux, liver dysfunction, a hole in his heart, cysts on his brain, cytomegalovirus, poor weight gain, feeding difficulties, low sodium and low potassium. We were discharged with Jaxon bottle feeding formula, on several different medications.
I tried so hard to think positive. Towards the end of the six week stay I just wanted to get out. I summarised it in my head to be that his kidney reflux and the hole in his heart were common in newborns, known to resolve themselves within 6 months to 1 year. He was on medication for cytomegalovirus for 6 months and then that would be clear. And the cysts on his brain may not cause any issues at all. This is how I got through. Forever hoping for the best case scenario, downplaying everything.
The next post is when I started blogging I was written in the moment rather than retrospectively as these posts have. Please comment with your thoughts and opinions reading this. Your feedback is what keeps me posting and writing is proving to be a helpful therapy for me right now. A therapy I wouldn’t be indulging in without your interest.