Wednesday 22 October 2014

Archie's journey. may be a long one guys so grab a brew! 🍡

So here we are. Those of you who haven't read previous blogs, long story short...



Having a little boy with a Special Heart. He needs a bit of TLC and all will be okay. (You will find out more I am sure of it!)
It's been a long nine months until today. Today has gone by fast.
So had a few bouts last week where little man had chilled right out. He was fine but as routine they book you for a growth scan!
Now about 3 days ago I started getting mild contractions. Pretty sure I was going into labour so I contacted the midwife. She said I was in the early stages.
So we waited. Waited for things to change or get worse or my waters to break. Nothing.
Today at 2:45 we went for a scan. They told us that there was no fluid around baby. Meaning my waters either have gone or something isn't quite right.
So after an hour of Cheltenham general doing the ring around at Bristol we were told to come straight down and we would most likely be induced.
After a swift cup of tea we left.
Got here around Seven. Was reviewed  (nice way of saying internal).
told I was going into labour but they wanted to induce me and get the ball rolling.
So here we are so far...

2.25 am 2 hrs into induction.
 So here's where I get some shut eye before the pain starts. 


Yeah so that sleep thing I was going to do... Didn't happen. I was very uncomfortable and if your organised to be a parent and it's out of your hands. You tend to let your mind whirl. But it's stupid shit like... did I remember to sort out that bill? Have I got enough washing powder as I won't have time to get some when he's here. Not much to do about it now lol. 
I also keep thinking about how I feel when he's here. Like I always imagined it would be the best feeling in the world and everyone tells you it will be. But what if he doesn't recognise me as his mummy? What if he doesn't like me and cry's when I go near him.  
I bet this is normal as hell lol. I do hope we get to meet him today but not getting too over excited as he will come when he's ready. 

So here we are... 7.35 am still waiting. 




Okay so it's now 4.40 in the afternoon. Feeling a bit like we have backtracked a little. I started to contract a lot like a minute apart.

So they checked me out and it turns out my body was contracting too much for my body to keep up with. So now they have taken out the thingy that induces my labour and are hoping my body will do it on its own... I've gone from full blown labour pains back to horrible back ache. 😑
the good news is that my cervix is thinning so hopefully I will start to dilate now :).
when she told me I started crying. I felt like such a woos. But apparently I've done better than expected as I won't feel any more pain than I have already felt and I've had 0 pain relief! Well done to me! How great would it be if I did this with just gas and air! 
So let's see how things go for now!! 

Okay guys. Was doing this step by step but things got a little busy! 
So from here the pessary was in until 5.30 am. Nothing was happening so they took it out and monitored me. Now I had fallen asleep at this point so I wasn't watching the monitor.  Archie's Heart rate was decelerating by quite a bit so the midwives felt it was time to go down to delivery suite where I could me much more closely monitored. This all happened at about half 8-9 o'clock ish in the morning.
Tell you what is a bit of a shock... getting woken up by a Dr saying they are just going to have a little look! I was so disorientated that it was rather painfull! That and Archie's head was actually so low they had to go round it to find out how dilated I was!
 
We arrive on the labour ward and get ourselves settled, Gran and Mammy arrive to keep us cool, calm and collected lol.
Since they have done the internal I've started to get contractions! They're not too bad at the moment though... we shall see.
 
From the looks of things Archie isn't a fan of the contractions, every time I have one his heart rate dips a little, although not so much that its dangerous yet.
I've decided that for his safety and whilst I'm managing the pain I'm going to get an epidural! That way if I need a C- Section I can just go straight down!!
 
Anaesthetist was really nice! She talked me through the procedure and I found out they numb your back before they stick the needle in which is a relief! was very worried it would hurt! Contractions are increasing and I'm about 3 cm dilated now!!
 
Btw ladies... GAS AND AIR IS AWESOME! Handy tip, the second you feel the twinge of a contraction take a huge breath in on it as it takes a few seconds to kick in! your head goes all light and fluffy and your voice goes really deep!! I thought I was imagining it but Ciaran was laughing as I sounded like a man! Wonderful stuff!
 
Feel bad as Gran popped in and she hated to see me in pain. She only stayed in the room a few minutes bless her!
 
So Epidural... They give you a pillow and place the gas and air in your hand. you need to relax as much as possible and they numb your back! I promise all you can feel is a slight poking around and they get you to tell them if its uncomfortable. apparently my spine is slightly at an angle so it took them a couple of pokes at it to get it right. The needle going in is attached to a thin tube and this leads to a drip that you can control if feeling starts to come back! Its so funny because you press the button and you can feel a cool fluid sensation running down your back it kept making me giggle! Honestly having it done was not as scary as I thought!
 
 
Well this is so pleasant! I've had Gran and Mammy popping in and out! Taking it in turns bless them! Ciaran and I are chatting away and he's giving me cuddles and cheering me up a lot! It's so surreal to be honest. I feel as if this is a bit too easy. just chilling out and sitting around. knowing my body is working away and I'm none the wiser! It's odd because everyone's like... 'your so strong, you haven't cried or moaned once, even when you were in pain'. Think you get into a bit of a zone. I keep telling myself I have a job to do to get my little boy out, safe and fixed.
 
 
 
Okay so.. a lot has happened between that last paragraph and now...
 
From this point on...
 
Things begun to move rather quickly, I was in established labour from around 2pm when they broke my waters. At around 7pm I begun to feel this odd pressure. It was quite funny really the nurse said it was all normal and turned straight to my notes! Then the next couple of contractions the pressure became more intense, so much that I needed gas and air to top up my epidural!!
 
After so long my body realised that the only way to relieve the pressure was to push. So I told them I'm pushing, I couldn't help it. It's like an instinct that you can't control! They made me hold off until they had a look and I was 7 cm. From then on I remember nothing! apparently I was breathing in the gas and air so much I was out of it! Ciaran says I was very loving and was staring at him telling him how much I love him!
On a strange side note in my mental absence I told Ciaran that his friend Jack was here and looking out for him. He passed away a few years ago and he is actually who we named Archie's middle name after. This is a bit strange as he hadn't even come into the conversation that day! Spooky or what?!
Now it was time to push... This is an odd sensation as I couldn't feel anything I didn't know when to bare down and when to stop.
As things had moved so quickly in such a short space of time Archie wasn't coping with coming down the birth canal very well so I had to just push as hard as I could and as much as I could to get him out fast! This meant that they had to give me an episiotomy (little cut) to help his head out. It is very tiring and in the midst of it all you just want to sleep!!
 

 
 
Then at 8:58 on Wednesday the 24th September Little Archie Jack McMillan was born into the world.
They whisked him off onto a special machine and helped him breathe for a few seconds with a ventilator and got him all up and together.
 
The next bit was just amazing as they placed him in my arms! We thought this was the best thing in the world! They had told us we wouldn't get a hold as he needed to go to the neo natal intensive care unit asap to be put on a drug called Prostone. This drug keeps a little duct in his heart open so he could still circulate blood to the lungs. But we got our little squidge before he left!
 
 
 
After that it was fairly surreal... I had just had a baby but nothing visual to show for it.
They gave me an injection to deliver the placenta, which is huge btw!! don't know how Archie had any room in there poor kid!
There was actually something wrong with the cord in the end! Didn't cause Archie any harm but it was attached to the placenta by two split membranes rather than one! They said if they had caught it when they broke my waters we could have lost him! Lucky escape really!
 
Now we had to wait. When they cut me I also tore. They said it was fairly deep (3rd Degree) So I had to go into theatre to have stitches. The only trouble was it was very busy and there were quite a few C- Sections. So we waited.
In the mean time I was throwing up a lot from the drugs they gave me to help deliver the placenta and Ciaran, my Gran and mammy all sat and waited for them to come and get Ciaran to take him to Archie. So I asked for Anti- sickness and then went to sleep.
 
Everyone was so lovely in theatre, they chatted away whilst they stiched me up. This was all happening at 3am mind (not that you really follow time after a day like that lol). When that was done I came out and they were going to take me in my bed to see Archie but Ciaran and I must have conked out because I was woken at 9 am with toast lol!
 
On my way back up to the ward we went into see him. He was all puffy from birth but he was perfect. I didn't care about the lines coming out of his belly button or the heal pricks or the feeding tube.
I looked straight at him and just saw my beautiful little boy. So tiny and perfect.
I really thought that would be the hardest bit for me. But it wasn't at all!
 


 
 
As the doctors were coming round they took me back up to the ward where they dosed me up on meds, took out my catheter and told me to pee.
When all that was done and we were settled in Ciaran took me in a wheelchair to see him again.
 
When we arrived they let us have a cuddle!!! He was so snug in my arms. Like he fit perfectly. No one can explain it really but its like an overwhelming sense of pride! Though it was scary knowing what my little one had to face, he was so small and I felt it was my job to take it all away for him. Makes you feel helpless tbh!
 
Then they told us Archie was being taken to the children's hospital down the road. Because I hadn't been discharged yet this felt like we were millions of miles apart! Ciaran went with him. They took a while to discharge me. It was a grand total of 26 hours before I got to see him again and it was getting frustrating because the paediatric intensive care (PICU) team wanted me there to sign some paperwork. For some reason if you are not married and you haven't registered his birth yet to his fathers name then the dad cannot make decisions or sign paperwork! bit harsh on poor Ciaran!
 
They had done an echo and from what they could tell it was not as serious... His original anti natal diagnosis was hypoplastic left heart with a narrowed aortic arch (basically smaller left side). When they scanned him post natally he was borderline. So much so that it caused a rather wide spread discussion as to which op was best!!!
 
They took a whole week from when he was born to decide. This was very hard for Ciaran and I as we wanted him to be on the road to recovery by this point (we are the most impatient couple going). We knew that they were doing what was best for him but at the time we couldn't understand why they were pushing it and giving his health a chance to deteriorate! Not that it did mind!! He was coping extremely well with life! could breathe fine on his own, didn't need help peeing or pooing (producing plenty of it I might add!). We got to hold him when we wanted and do his cares, like change his nappy and give him a wash etc!
 


 
 
If you ever go through something like this yourself, just remember they are doing what is best at every turn and that they know what they are talking about! There were two operations that came into their equation (if you've read previous blogs, luckily he didn't need the Norwood.) One is called the hybrid procedure. This is where they use a shunt to hold open that duct I was talking about earlier. This would have taken pressure off of the left side and allowed it to grow. This did come with several risks and a definite 100% chance of further operations when he was bigger.
The second choice was to just repair the narrowing in his aortic arch and hope that the left side would grow as the blood flow increased. The risk with this is that they would have removed that duct and there would be no going back if this operation didn't have the outcome we had hoped for. Things were looking pretty worrying but the Doctors were very hopeful! They felt we could trust that Archie was otherwise healthy and was coping with life so there was no reason to rush into any decisions.
Ciaran and I were getting frustrated by this point. We were told that they had sent all his data off to a specialist hospital in London and they would help them decide at this big Cardiac meeting on a Tuesday. We had been waiting all day by Archie's bedside for a decision and then a doctor came over at 9pm and told us they were still deciding. Ciaran did get angry, mostly because we were tired and anxious and just wanted to know what the plan was.
 
The next morning we arrived at the hospital just after the ward rounds at 10 am. Everything went all go! They told us they had made their decision and they would operate on him that day!!! It was crazy, we had waited an entire week and things were moving slowly. Then all of a sudden, he was going down that afternoon and they would perform just the arch repair and hope for the best.
We were so shell shocked we didn't really know how to feel. I personally was so pleased that this could potentially mean he wont need another operation if all goes to plan! But we didn't get our hopes up.
 
My best advice to any one in the same situation... Get family and friends around you. Do not sit waiting for your child to return.
 
At around 4.30pm They came for Archie to take him to surgery. Now, I've given birth and even that was easier than this moment. Ciaran and I had to trust someone else with our sons life. We had to sign paperwork to say we knew what the risks were. I gave him a kiss, our hearts were breaking and we said goodbye. When they left with him we just stood in his bay, crying our eyes out for about 5 minutes. I felt like someone had ripped out a piece of my heart and run off with it. How could I possibly have left him? He needs me by his side and I cant be there. He's so tiny. He shouldn't be going through this. Why couldn't it have been me!!! These are all things that run through your mind. No one could ever prepare you for it.
 
We walked out of the hospital and into the adjoining Costa where Gran, Mammy, Meg (sister) and Conar (Brother) Were. I couldn't help it. The tears just came flooding out. I felt like it was my fault he had to go through it.
 
We had a cup of tea and then decided to walk down to the Beefeater and have some food. Mam thought it would keep our strength up for Archie (cant argue with that... Clever woman!). It was very pleasant. we sat chatting about genetics and that we believed that it must be Genetic as other members of the family has similar conditions. They made us laugh but didn't deliberately ask how we were, just kept us busy chatting away. Think it was the best way to deal with that situation at the time to be honest.
 
Then my phone rang... The hospital were calling to let us know he was out of theatre, I asked if the operation went well and if it worked.. They said as far as they knew yes it did!!! I was amazed! Ciaran and I couldn't stop hugging! Our little boy was through the worst part! Just needs to recover now!
 
Never felt so relieved!!!
 
Now, Luckily Ciaran and I had been prepared for what we were going to see post op... thanks to the lovely Specialist nurse Dianne!! Amazing woman, she showed us another little boy with a similar situation.
 
So when we arrived back at PICU We were pleased to see he wasn't as bad as we thought he would be. His scar was covered and yes he had a few wires, a breathing tube and a chest drain in but he was still that same perfect little boy.

 
 
They told us that he didn't need any more surgery, from the look of the Echo the left side seemed to be growing and it was all looking very good!!
 
Obviously he needed to recover and that does take a little while.
 
 
A couple of days later we were amazed! They had removed his chest drain and his breathing tube, they had taken him off of most of his medication and he was thriving really well!!! We were so surprised!!
 

 
 
We were then moved to High dependency unit on the Cardiac ward... Was only there for a day!!
 
 


 
As you can see his face is less puffy and they have removed his breathing aid!!! He was recovering so fast it stunned us all!
 
 
Though he was recovering fast we needed to start to sort his feeding out... This was the hardest part. He was only taking small amounts on the breast and the same when we tried bottles. We had to top him up via his feeding tube. Little less and less each day but it was difficult. imagine introducing your stomach to food after a week of not having it! You would probably throw up! And he did! quite regularly to begin with...
 
As the days went on Ciaran and I would get more frustrated. They told us that if we were trained to feed him through his feeding tube we could take him home! Though we would much rather have established his feeding it did get our hopes up a great deal.
 
He had had an echo done and was cardiac sound now! No more worries of a serious issue with his heart. Literally the only reason we were there was to establish a feeding routine!
 


 


 See... aside from the feeding tube, he looks healthy as a horse!

Then one morning they came in and said we were transferring to Gloucester Royal in an ambulance!!

We were thrilled! they said only a couple of days and you'll be home! eeek finally!!

So off we went!

This is where it got a little tough and looking back on it Ciaran and I could probably have been a bit less difficult.

Archie was improving every day and by day 2 in Gloucester we had both been trained on how to feed Archie through a tube!! We could see no reason to keep him cooped up in hospital when we could take him home to teach him to feed in a relaxed atmosphere. He was only on a small amount of top up anyway.

So every day we asked the Dr why we couldn't take him home, and every day we were told a different answer... We want him to gain weight first, when he had gained weight it was, I want him off that tube, when the tube came out it was I want to monitor his growth for a few days. Luckily we had been allowed to leave the hospital during the days otherwise we would have gone stir crazy!! In the end he reluctantly let us go!!! It just so happened to have been Ciaran's Birthday as well! We were over the moon!!!!!!

Now we may have gotten funny with the doctor, we may have even broken down in front of him. Do bare in mind ladies and gents that Doctors may know how to heal your child or feel they know physically what they would like to monitor but as a parent, remember you know your child and what they are capable of. We spent 24hrs a day with Archie and had enough common sense to know that he was a healthy thriving baby then would have been recovering better in the comfort of his own home. So we pushed. We may have been disliked but I tell you what... He's home now, settling into a lovely routine and he's happy and healthy.






So that is his journey right up until today. If anyone asks how Ciaran and I feel about this experience. We honestly do not know, its like someone else lived it really. He's home and safe, he looks normal. I can barely remember what he looked like with all the tubes and wires.
I will say I appreciate his life so much more. He is my miracle baby and he has fought so hard to be a part of our little family.
he just brings light to us all and has brought our families so close together. Our little fighter. We love you Archie Jack. Welcome to the world <3 xx
 
We have a lot of people to thank for all the support so here goes...
 
first and foremost... the Cardiac team. Mostly Dianne our specialist nurse who guided us through pregnancy and prepared us for our stay in Bristol! Thank you.
John Forsey for diagnosing the condition. Bev for the follow up appointments. the anaesthetist, and of course the surgical team themselves. fair play I admire you. working on something the size of Archie's fist! You saved my sons life. I can never repay you enough.
 
The entirety of the nursing staff... from the midwives before birth, to the ladies that delivered Archie, to the PICU ladies and gents, and the cardiac ward team!! You all kept us going. Making us laugh, talking us through, teaching us. Generally being a huge support! My god. I aspire to be like you. Giving families hope and support one day. There just are no words. It made our stay so much more relaxing!
 
Ronald McDonald house charity. This is an amazing cause and the next time you pickup a big mac meal with a large milkshake.. pop a 5er in the box because this is the most fantastic opportunity for parents and siblings of children in Hospital. Giving them a place to stay. facilities to cook and it just relieves so much stress. But sadly there isn't always availability but there can be with the right amount of donations so please do it!!!
 
The British heart foundation. Without your research my son would not have lived and for that we cant thank you enough.
 
Now to all you loved ones... Family, friends, friends of friends and so on. We are so grateful for all of your kind wishes, positive thoughts and energy that you sent our way. We genuinely believe it helped towards a speedy recovery for our little man!! We were absolutely flabbergasted by all of the support!! Kept us going really. How much you all loved our little boy.
 
Our families... Both of which have had deep personal connections to our little boy and we wanted to thank both sides for coming together as a unit and giving us so much love. We love you guys and we wish we could pay you all back somehow.
 
Tizzy, Megan and Conar... Where do I start with you guys? Been an amazing rock really to the pair of us. Each step we have taken on this journey you have been there. Giving us advice, comforting us, bringing us down to earth, cheering us up and keeping us busy. Thank you guys. We love you so much. Archie also loves his aunts and uncle!!! Especially when you change his bum ;).
also an extra thank you to Conar for the lifts back and forth from Bristol!! We owe ya one Bro!!!
 
My mum and dad. It's not been an easy road but everything I have been through has taught me to be strong and I cant run from all the bad that goes on in my life. I'm glad you never shielded me from anything and you gave me the freedom to be the independent woman I am today. So thank you. I hope your both proud of me as any child would want their parents to be. I know I've not always been the easiest kid to rear!
 
Gran... Pretty much been the most constant thing in my entire life. Never let me get too carried away, always kept me grounded. Offered my emotional, and financial support, given me a home for me and my boys. Loved me unconditionally for who I am, faults and all. Told me straight. Felt my pain. Let me come over at 3 am because I'm crying and upset! You've been everything I could ever ask for rolled into one amazing lady and I am privileged to be your grand daughter. You may have to move in as Archie is quiet for you! Love you So very much you brilliant woman! I cant thank you enough. <3
 
Mammy... Don't think even a heart felt message could even cover it tbh. From the beginning of mine and Ciaran's relationship you have taught me how to be a strong and independent woman. Because of you I can fight my own battles, defend myself, appreciate myself and you taught me that real family is something I don't need to fight for. It just comes together. You showed me how to be a mother really, just by being a mother to your own children. You encourage them and protect them at all costs. You know how to spin things to make us think about what we are doing. We haven't had it easy. People have walked away from us and things have changed so drastically in 3 years. But we have stuck together and been strong for each other. You took me under your wing and treated me like your own. You still do, I don't think a day goes by where you haven't asked if I've eaten lol! I also have to thank you because you have given me the love of my life and in turn the most perfect little boy. Ive dreamed of having this wonderful little family and you made it possible. Thank you for being there when we lost our first. I think I would probably have still been a mess without you guiding me to move forward and teaching me that things happen for a reason. You were right! Thank you for all of your support with this monkey as well... bringing us food, doing our washing, constantly texting us moral support and calming us down on a daily basis! We would have been emotional blobs on the floor without you. You have turned me into someone who can face things head on, not shy away because I don't want the hassle. Archie needed a strong mum and you have created one just for him. Love you loads.
 
Finally to my beautiful amazing fiancΓ©e Ciaran. When I met you I was a child. 17 years old and I stumbled across my soul mate. I must be the luckiest girl alive to have found you so young. We fit together like a piece from the same puzzle. Not only are you my partner but you are also my best friend. You make me laugh, you push my buttons, you make me feel loved and cherished and you make me feel safe. I have grown up with you. You've always stood by my side and fought to protect and defend me (even when it wasn't justified). When we were having our baby all I wanted to do was look into your eyes. They are so calming and gentle and it made the pain bearable. The love that we share is endless and something in that room made us stronger. We are like the knots of a rope now, together we are strong and nothing can break us. That includes our beautiful little miracle. You have given me the one thing I have always wanted, a normal, happy family. No pain, no heart ache, just you, me and Archie. Forever and always 381.
 
Thank you for reading guys... I told you it was a long one. Hope you made it all the way through! I do tend to ramble.
Now I have my sons birth fully documented with all the details :)
Hope you enjoyed the read! xx