Friday, 18 April 2014

Lucas's Birth Story - Part 5

This is the next instalment in Lucas's Birth Story

You can read part one here
You can read part two here
You can read part three here
You can read part four here

When Lucas was taken to NICU, I stayed in recovery for a few hours and then was moved up to the ward. I was segregated away from the other Mums, in a special section for Mums with babies in NICU.

I had a little rest, some food and more painkillers. The painkillers were dihydrocodeine. I was offered morphine, but refused. The dihydrocodeine was enough. I am not good with painkillers any stronger then diclofenac. They make me spaced out and almost like I am drunk!

I requested to go and see Lucas, they kindly took me down on my bed so I didn't have to attempt to get in a wheelchair.

I was shocked at how ill Lucas looked. I think I expected him to be OK as he didn't seem to have any problems when I held him after he was born.  

I was told that they were about to hook him up to CPAP as he needed that little bit of extra help to breathe. He also had Respiratory Distress Syndrome (Because his lungs were not fully mature) and possible sepsis.

It was heartbreaking to see Lucas like that. Every parent wants their baby to be born perfectly healthy and I was no exception.

Lucas was hooked up to a monitor that showed his heart beat, his breathing rate and his oxygen levels. This monitor over the next 12 days I would hate with a passion!

After seeing Lucas I went back up to the ward, Matt left to go and get Cameron from my Mum's and I got some more rest.

My Auntie and Uncle arrived in the evening and brought me tons of premature baby clothes. I had kindly asked them to pop to Asda to get me a few baby grows, however they decided that it was the perfect opportunity to go and raid Baby Gap and Next.

I managed, with help to get into a wheel chair and we went down to see Lucas. By this time he had to have phototherapy because he was severely jaundice.

This was caused by his bilirubin levels being too high. I was also told that Lucas had too many red blood cells which was apparently caused by my blood mixing with his. His blood had become 'sticky'

That evening, whilst I was resting I had a phone call from NICU asking if they could give him a dummy as basically they couldn't stop him crying and he was kicking up a fuss. I laughed and agreed. That's my boy. Very ill in NICU and still causing trouble.

The next morning, he only had a Bili Blanket on. His bilirubin levels were falling nicely.

It was NICU's decision to put Lucas on his front, apparently he settled better that way.

The day after that Lucas didn't need the Bili Blanket any more.

Cameron came to visit Lucas and he got very upset seeing Lucas like this. For a three year old he is very sensitive.

The following day I got to hold Lucas for the first time since he was born. He was now off of the CPAP but still having oxygen pumped through into his incubator.

They had also started to feed him formula. Just 5mls every few hours via a tube through his nose but it made a big difference from the sugar solution they had been using previously.

Three days after Lucas was born, I made the decision to go home. It wasn't a decision I took lightly but Cameron needed me at home. Although Cameron had Matt and my Mum, he needed his Mummy, he needed some normality back in his life.

In the car on the way home, I fought back tears. I felt torn. Having one of your kids in NICU and the other one needing you at home. I felt like I was a traitor, that I had chose Cameron over Lucas.

Matt and I then decided to 'tag team', He would go in one day and I would go in the next. That way Cameron had one of us at home and it would remain a normal environment to him.

6 days after Lucas was born, he was moved out of the high dependency unit and into a less dependent unit of NICU. His feeding tube was taken out and he was given his first bottle.

They had concerns that Lucas wasn't drinking enough and they were going to put his feeding tube back in. I told them not to and to start feeding him on demand. I didn't want him to wait 3-4 hours for a bottle. If he got any worse then they said they would put it back in, I agreed. Luckily he didn't need it back in.

We knew the next stage was to get him off of the monitors. After that he needed 48 hours off and he would be allowed home.

Every morning we would make our way to NICU hoping that the monitors had been turned off. But they hadn't. It was soul destroying.

The reason why Lucas wasn't allowed off the monitors was because he kept 'Desatting' during his feeds. When I checked his chart, it turned out he was only desatting during the night feeds. Apparently the nurses couldn't get to him straight away to feed him, so he was so upset by the time he got his feed, he wasn't coordinating his breathing and drinking and going, well, a bit blue!

I was angry at them for this. I know it wasn't totally their fault. But they weren't helping the situation. I told them it wouldn't happen if Lucas was at home. As he wouldn't be made to wait for a bottle.

I asked to speak to a consultant and explained my case.

She instantly turned the monitor off. I cried with relief! I had waited so long for the monitor to be turned off. We were getting closer to getting him home.

The consultant then asked if I could stay in one of the NICU flats for the next couple of nights with Lucas to see if he desatted with me, if he didn't then we could go home.

Later that day I moved into my temporary home and settled down for the night with Lucas in the open cot next to me.

His first feed didn't go well. I don't know whether it was my paranoia or he did actually go a bit of a funny colour. But he recovered quickly. After his feed, I took him back to NICU and went outside crying on the phone to Matt. I asked him to swap with me. I didn't feel like I could look after Lucas. It was scaring me knowing that he may desat and I didn't have the monitor to tell me. What if I didn't notice and something went wrong?

After a long chat with Matt, I went back to NICU, got Lucas and went back to the flat.

Every feed that night I was shaking with fear, but we got through it. The next morning after no major issues with Lucas during the night, I took him back to NICU and was told by a lovely nurse that she would recommend that we were allowed home that day.

She spoke to the consultant who agreed. Finally 12 days later, we were able to go home.

For the last 12 days I had seen parents take their babies home with big smiles on their faces, I resented them so much. But now it was our turn to go home. I said goodbye to some of the parents I had got to know over the last 12 days and wished them the best of luck.

After waiting all day for Lucas's discharge papers, Matt came to pick us up and we went home.

Finally, our family was all under one roof!

Thursday, 17 April 2014

Cameron's Wheeze Update

On Monday I took Cameron to the local hospital to see a Paediatrician about the constant wheeze he was developing after attending Pre-School.

After 6 months of being on and off steroids, enough was enough and I finally got a Doctor to refer us to a specialist. Cameron could not keep taking steroids because of the health risks.

A nurse made a note of Cameron's weight and height and we waited to be seen (Funnily enough it was the same nurse who looked after Cameron when he was admitted into hospital back in November)

We were called in to the paediatrician and I spent 20 minutes explaining what had happened since November. I only got to Christmas when she commented on just how many doses of steroids Cameron had been on. I told her I hadn't finished yet.

The paediatrician agreed with me that Cameron couldn't continue going on the steroids because of the side effects. Side effects of steroids are a low immune system and stunted growth. I agreed with her but I also said we couldn't live our lives in and out of hospital only for the outcome to be the same as if I had gone to the Dr's.

The paediatrician was surprised that the Dr's willingly gave Cameron so many steroids. To be honest so am I! I had asked about other alternative medications before but was always told they were not suitable.

Cameron is currently on his blue Salbutamol Inhaler as and when needed and his Brown Preventer inhaler 2 puffs twice a day.

I told the paediatrician that now he wasn't at Pre-School any more, he hadn't had any more episodes of Viral Induced Wheeze and he was only having his blue inhaler twice a day by default. I didn't see for him to have it any more unless he needed it. The paediatrician agreed with me.

So his medication has now been changed.

Cameron will continue with the Brown Preventer Inhaler Two Puffs Twice a Day
Cameron will only use the Blue Inhaler when he develops a cold or appears out of breath

Cameron will also start a new medication called Montelukast.

Montelukast is a leukotriene receptor antagonist that blocks substances called leukotrienes. Leukotrienes cause narrowing and swelling of the airways in your lungs. By blocking this, Montelukast improves asthma symptoms and helps control it.

Cameron has the granule version. He has one sachet a night which has to be given with cold or room temperature food. I have decided that the easiest way is to mix it in with his yoghurt. He noticed it was in there on the first night but still managed to have the full dose.

So I am hoping that Montelukast will prevent any more episodes of Viral Induced Wheeze and the need for further use of steroids.

Wednesday, 16 April 2014

All You Need To Know About Hair

Kerafiber - hair fiber hair loss infographic

Note: This is a sponsored post that I received monetary compensation for posting. I decided to share this with you, my readers as I love interesting facts! 

Wordless Wednesday - 16/04/2014

Infacol & The World's First Virtual Colic Clinic

How many of your children have or are suffering from Colic?

Lucas suffers from Colic badly and I swear by Infacol. Lucas has it before every bottle and for us it does make a huge difference for him.

Did you know that 1 in 4 babies suffer with colic? It is often associated with crying fits that can last for more than three hours and often occurs late in the day! It can be a stressful time for parents dealing with a child with colic, obviously the child picks up on this and you are therefore creating a vicious circle.

But you need not fret no more.

Infacol, Britain's Number 1 selling infant colic remedy have launched Colic Help, the first of its kind that offers a new way for parents to get support any time they need it.

"We know that anxious parents are turning more to online research as GP's are unavailable late into the evening, which is when colic can hit. Infacol want to give new Mums and Dads someone to turn to when in need of this extra support and guidance, at any time of the day or night" - Nikki Khan, Infacol's Expert Midwife 

Colic Help is designed to answer the questions you have on the subject of colic and provides extra support for parents in need.

You can also take a simple 3 minute test to determine whether it is colic cause your baby to become distressed.

The 24/7 clinic works by encouraging parents to choose from commonly asked questions about colic using a drop down menu or even asking their own question and getting an instant video answer from Nikki Khan.

You can access Colic Help via multiple device platforms, including smartphones, tablets and desktops.

Note: I received no money to write this post. However the team at Infacol did send me a little hamper to say thank you 

Tuesday, 15 April 2014

Transition Funding

As you may all know by now, Cameron, my eldest has a Speech Delay.

It's not as bad as it used to be.

When I started this blog back in 2012, Cameron was only able to say a handful of words and the rest he would hum.

We have come a long way since then, however his speech is still not perfect and a lot of people do have problems understanding him.

Because we knew Cameron would struggle when he starts school this year, his former Pre-School and I applied for transition funding.

This funding would help Cameron transfer from Pre-School to the School environment and get him the support he needs.

The application requires a lot of information from all the professionals working with Cameron. So we needed reports from his Speech Therapist, Paediatrician, Health Visitor, The Pre School and Myself.

The application went in first time round without the report from the Speech Therapist and the Paediatrician. As one was on holiday and the second couldn't get it there on time. Not their fault.

Unfortunately the panel couldn't make a decision on that day. I am not surprised! I did say they wouldn't. After working for Local Government for many years, I know, that if you want a decision made, you need to include all the information.

Luckily we had another chance for the following week.

I chased around everyone, made sure all the information was together, explained to a member of the panel why we had 5 Speech Therapists over 18 months and hoped for the best.

I rang the panel representative the day after and found out that we had got the funding. It was the lowest level of funding but we still got it!

Cameron will get 19.5 hours a week 1:1 support at school for 3 terms.

Then we will have to apply for it again if needed.

I am over the moon for Cameron, and a lot more relaxed.

We find out what school Cameron has got in to tomorrow.

And although deep down I know he will have got into the school that we don't want him to go to (It's the closest to our house) I am happy to know that he will have this support, that he won't be lost in a room full of 60 kids (Yes 60, the two reception classes are opened up into one)

So tonight I will be very nervous, hoping and praying that he gets into the school we want so badly for him.

Wish us luck, we are going to need it!