~Joshua's Arrival~

Joshua James Beavan
Born on 16th September 2003 @ 1:30 a.m.
Weight: 7 lb 1 oz
Looking pink and healthy so far!

Mum and Dad and I are off to see the heart people at Alder Hey this morning to have a closer look at me and see what needs doing.

Everybody happy with me so far!!!

Hope it lasts!

Love to everyone who asks!

Day 1

Joshua born healthily and safely. Seems to be doing really well. Good weight and colour. Every fighting chance, we hope!

Get to Liverpool. Scans carried out. Heart seems no worse than anticipated. Surgery seems viable. BUT. . . Another abnormality is found: extra blood flow through the neck or via a strange route. Not yet known where it comes from or where it is going. Further scans tomorrow then diagnosis and operation(s) plan. Medics not happy about the discovery and more has to be known before they can consider surgery.

The waiting and wondering! . . . . . . .

Please pray for Joshua and especially for courage and strength for Mum (Fiona).

Good news. . . Ronald MacDonald House has a room for the family to move over tomorrow to be near Joshua. 9 in one bedroom! But it's a room at least and we are thankful.

We await crucial news on Day 2.

Thanks for all your kind thoughts, wishes, messages and prayers.

Updates:

Day 2: Wednesday 17th September 2003

Today was spent waiting and waiting....AND WAITING for someone to tell me what was going on! One minute I was told that they were not concerned about his other condition, the next I was told it was a huge concern but they were waiting for the right equipment to arrive! The roller coaster ride that everyone had warned me about had begun! Simon spent the day at home trying frantically to pack for what could be six days or six weeks, judging from what he arrived with he opted for six weeks for safety!

By the afternoon I was aware that they thought Joshua's other problem was very serious and were just waiting for the right scanning machine to arrive. I spent the day trying to express milk, yuck! Thankfully two of my friends arrived and we all sat with Joshua, it was good to be able to show him off as any new mum would.
Simon and the children arrived late afternoon and we were told they were going to scan him and tell us their prognosis at 6pm.The children all got to see him, two by two for the first time which was lovely as they were at this stage unaware their was anything else wrong.

Sadly when we went back to meet with the wonderful Dr Gladman they had established that Joshua had another very rare and very severe condition called Total Anomalous Pulmonary Venous Drainage which in layman's that means that all the pulmonary veins drain to an anomalous site which I think in Joshua's case was his right ventricle and going up into his head (although I don't fully understand!)This condition alone carries a risk in surgery, the two together are fatal. He said this would all be discussed at the consultants meeting on Thursday morning and they would let us know what they were going to do at 10am.

We spent a while digesting the news and then Simon went back to the children at Ronald MacDonald House and my friends Christine and Mary came back to say goodbye to Joshua and we all prayed for him and for me. I was so glad of their support at this time and the fact that they had the courage to stand and cry with me instead of trying to find the right thing to say, when there was so little to hang onto.

Abie came later to hold Joshua for me whilst I put the little ones to bed with Simon and then I went back and we spent some time with him together. I will be forever grateful to our kind night nurse Jackie who had the sensitivity to chat to Abie, let her feed Joshua through his tube (all my own milk now!) and let her change his nappy. It is amazing how little things we do so regularly with a normal baby and take so much for granted, take on such a new significance with a baby that is so ill and that you are aware has such a short time to live.

Once Abie left I sat with Joshua for ages and talked to him, fed him and cleaned him and then the night staff suggested that as he was so much calmer in my arms I could have a comfy chair by his incubator and they would let us sleep together, me holding him with all his tubes!

What a joy it was to cuddle up to my little boy and hold him ALL NIGHT! They also took my camera whilst I was asleep and took some photos of us as well.

Day 3:Thursday 18th September 2003

Today we all woke up feeling quite sick, knowing that in a few short hours Joshua's fate would be decided. I think deep down I knew what they were going to say already. I sat by his incubator and prayed that somehow I would find the courage to cope and accept what was to come.

We were both so glad that we did not have to wait long and Dr Gladman, true to his word arrived at 10am to see us. We were so fortunate to have a Consultant who not only had twenty years experience but also had one of the most compassionate bedside manners I have ever encountered. He very gently had to tell us that there was absolutely nothing they could do for our beautiful little boy. Devastating as it was to hear, we were both so grateful that we were not faced with the scenario where they felt they could operate but he would only stand a 20-30% chance of surviving, because that would be an agonising choice to have to take. As it was ours was very black and white. Basically, out of 8 consultants and all their combined experiences they had only ever heard of one more baby with his combined conditions and he would not have withstood any surgery, and even if by some miracle he did his quality of life would be negotiable and he would be in and out of hospital for his childhood receiving treatment.

At that stage we both realised that we had to let him go. Instantly your shift in thinking changes and you just want the most peaceful and pain free end for your child. We both wanted to bring Joshua home to enjoy whatever time we had with him there so the hospital staff started to make all the arrangements for him to be brought home on Friday under the care of our local GP and a team of 'Diana' Nurses who would be on call if we needed their help.

Apparently it is unusual for parents to bring their babies home as most find it too stressful an experience, however for us, having to juggle seven children in a hospital and spend quality time with Joshua as well was equally stressful and we all just wanted to go!

The hardest thing was having to tell the children that we were going to bring him home to die and not be operated on. They moved us into a more private side room for the rest of the day and let me hold Joshua. They took him out of his incubator, and took out all of his drips and monitors as well. The Dr told us that at 6pm they would take out his Prostin Drip as well (this is the drug that keeps the Aorta open until surgery can be performed).

After the initial shock and plenty of cuddles we all set about making memories of him. Our Nurse Marie suggested doing hand and foot prints, (little did she know she would end up doing 10!!!) and cutting some of his huge mass of lovely dark hair. Again I am so glad we did this whilst he was alive as we took photos of him and it was a really fun, family time, he loved having his feet painted and we all laughed at the shimmer paint left on him afterwards! If we had done this after he died it would have been such a huge stress instead of the precious time it was.

We took some more photos of the children with him and then they came in and took out his Prostin drip. I found this very stressful as I was aware that this was his main way of surviving, and although they were going to continue giving him a smaller amount orally it would not have the same effect.
The children went to bed and I sat with him, sang to him and told him for the millionth time how much he was loved. Susie and Miriam came to hold him while the little ones went to bed and then Abie held him whilst I went over and said goodnight as well.

Simon and I both went in later on and the three of us bathed and dressed him together. Abie went to bed and Simon came back and we spent another precious few hours with him together.

I spent the night with him in bed cuddling him again although during the night he was very unsettled and I had to stay awake for most of it, knowing that his time was short I didn't mind as every moment with him was so special and precious.

Day 4:Friday 17th September 2003

Night drifted into day and Miriam got up early and came to visit me and Joshua before her breakfast. By 9am I was aware that he was much more unsettled than I had known, and I think, deep down I was aware that he did not have very long to live. He was unusually alert and looking around the whole time, I felt as if he was almost having a good look before he died. I called the nurse to take his heart rate and his sats, and his heart rate was slowing down so I asked to see the consultant. When he arrived he confirmed my worst fears that we would sadly not be able to go home as Joshua had only a couple of hours to live. Simon came in at this point and we were able to have a few moments alone digesting yet another sad blow.

One of the things I had arranged en route was to have a family photo of us all together taken and I was devastated this would not be possible, so I asked if there was a hospital photographer that could come, thankfully there was and Simon managed to compose himself enough to go and get the children and tell them someone had kindly offered to take our picture! I really admire the poor guy, used to taking photos of accidents, who bravely came into our room and sensitively took one of the most special and treasured photos we will ever have. Finally I have my photo of my special family, my eight children together for the first and the last time. I have posted the photo on our page for you all to see.

After he left it was about 10.20am and we were all aware that Joshua was deteriorating so I sat and held him with Simon and all the children around us. We prayed for him, thanked God for giving us three and a half special and precious days with him and told him how much we all loved him. It was not the fearful and scary thing that I had imagined but a very special time where I was just so aware of wanting to help him move on in his own time and no long push any agenda for him. I was aware he needed to go when he was ready, not when we were, this was his call now and we had to respect it.
Quietly, he slowed down and finally took his last breath with us all there together. We must have sat for what seemed like ages trying to take it all in, and then the Dr sensitively came in and confirmed what we already knew.

We were given time and space to just be with him and slowly take in what had happened. Although it was undoubtedly the hardest thing we have ever had to do, we were both relieved at how peaceful it had been. In fact the doctor commented that in 20 years it was the most peaceful ending he had seen, and for that I am grateful.

The rest of the afternoon was spent making the inevitable arrangements and then we were free to go. We had already decided to take Joshua with us, and felt that this was the right thing to do, we asked all the kids who, like us, could not bear to leave him in the hospital all alone. We said our goodbyes to our lovely nurses and Dr Gladman and took our beautiful son home. I got to be like every other new mum who leaves hospital proudly carrying her new baby! even although in reality we must have looked an odd sight!

Once home we all sat in the lounge, it was so good to be home with Joshua at last. No more hospitals, intrusions, incubators, needles, decisions...it was just relaxing. My friend Marion visited with her two girls. I was so grateful at her normality, and the fact she brought her children as well. It was all so happy. The children showed off their new baby and we all sat around, the TV on, the kids chatting and coming over to kiss Joshua, us holding him and relaxing. Instead of a sombre evening it turned out to be another happy event.

Joshua came to rest in our room surrounded buy candles we were able to have the privilege of more time to look at him, talk to him, cry with him. Although I fully appreciate this would not be most peoples choice, for us it was such a comfort to have him still with us, it meant the pain of separation was not trust upon us so soon after he had died and we are able to accept his parting in our own time and in our 9 own separate ways.

Day 5:Saturday 20th September 2003

I slept last night for the first time in five months! No longer have I anything to worry about!
It was lovely to wake up and see Joshua's beautiful little face once more. Jonathan came in and chatted to him and we all spent time with him separately today, something that for the little ones was so hard to do in the hospital.

I was amazed and touched at how many of the girls' friends came around today, bringing flowers, gifts and all wanting to see Joshua. It has helped Abie, Miriam and Susie cope so much better as now their friends have seen Joshua he is a real little person to them and they can share and talk about him as well. By his crib we left my computer with all the photos that we had taken and that Simon had made in to a slide show with music that the girls could run for their friends to see.  In three and a half days we took over 200 photos of Joshua, we managed to fit a lifetime of memories into every hour of the day and night and appreciate every minute we had. I can honestly say that I have no regrets.

We have arranged for Joshua to stay at home until Thursday when we will have a little private service for him at the local crematorium. Then we are going to bring him home. We have designed a lovely headstone for him with a base where we can put a candle, his urn and a vase for flowers, and find a quiet spot in our garden where we can put this. That way he is with us forever, no matter where we go, he can come and be part of us too. We can visit him whenever we want and put whatever we want around him without fear of vandalism. When it is ready, I will post up some photos.


So this is the end of my updates for the moment. As life continues I will post updates of our news.
I am so glad that I have been able to share Joshua's life on this site and I hope and pray that in some small way his short life will have touched you. That means, for us it was not wasted.

I do not regret for a moment continuing my pregnancy, or any of the prior choices I have made. I would never take back the three and a half days we have had with him and we are forever grateful for the fact that although stressful, knowing so far in advance about his condition gave us time to quietly prepare for every eventuality. This has meant that we were able to calmly do things the way we wanted instead of making rushed decisions under stress, ones that perhaps we would later regret.
We always knew that Joshua had a very severe condition, one that carried huge risks, not only initially, but potentially for the rest of his life. We are full of admiration for the many families who are at all the many different stages of this stressful journey as it truly is an undertaking for life, and unless you have experienced it, there is as we found out, no way of preparing for the rollercoaster of emotions and enormity of stress that you feel.

For those of you reading this site , who have just been diagnosed HLHS, it is worth it! Look at our photos of Joshua, and all the memories that we, and our surviving children have. Having children is a huge emotional gamble, whether they are healthy or sick, there are no absolutes, and we have no idea what will happen to any of them. Life is precious and perhaps over these past five months we have been reminded again to make the most of every moment that we have.

Wednesday 24th September 2003.
Today is my 40th Birthday. Rather a surreal experience to open Congratulations on your new baby, Happy Birthday and With Sympathy cards all on the same day!! As we spent most of the afternoon at The Funeral Directors and Stone Masons, I guess my Fortieth was unlike most!!!!
No one told me how busy I would be this week! I thought it would be so quiet, but each day was a mad rush to get everything ready for his farewell service, yet still trying to spend quiet times with him as we were so aware that these would end soon as well. We decided for the children to call it a farewell as this takes all the creepiness out I feel. They have all coped so well this week and visited Joshua constantly with the spoils of their day, a piece of school work, a Happy Meal balloon, shells from the beach. Although he has stayed put, he has been very much included in their everyday lives and I am so pleased we have had this special week with him. As the week wore on the reality he was really no longer there sunk slowly in for both us and the kids. For us we needed this time with him for that to happen.
It is hard to imagine that a week and one day ago I gave birth. When you try to make the absolute most of every single minute, the days seem so much longer!

Thursday 25th September 2003. Joshua's Farewell Service.
I guess this is the day that every parent of a deceased child wakes up and dreads.  Again it was very rushed with everyone trying frantically to get ready on time (not something we are famed for!)

We all had some time with Joshua to say or goodbyes quietly and then our lovely undertaker Daneiol came to take Joshua away. It was so much harder to let him go than I had thought. To never gaze at his beautiful face, or to stroke his lovely hair will be something I will miss forever, I am just so glad we delayed our final goodbye and at least got another week with him, you know he is not really there but it helped!

All to soon it was time to go. Bella and Martha handed our few guests a carnation with a blue ribbon and an order of service each. We were so glad that our Pastor Barry could lead our farewell rather than a stranger. Miriam and Susie had written Joshua a rap sond that they bravely performed, Simon did a reading and I read out my goodbye (without cracking up! I am so pleased to say), our friends said some prayers and another friend Mark let us use one of his beautiful songs to listen to before we went. It was lovely, just the peaceful way we had wanted and the sun shone for us as well.

Afterwards we said our goodbyes and went home to get changed before heading off into the mountains of Snowdonia for the day. As I sat by the beautiful Llyn Gwynnant I really could feel Joshua  as the sun kissed my face and the wind gently blew my hair. He was still there, somewhere looking down on us all and happily smiling.

Goodbye for now, thankyou for sharing Joshua's brief life with us, it has made us feel he is known to you all, and therefore a real and important part of our family.

Simon, Fiona, Abie, Miriam, Susie, Bella. Luke, Martha, Jono and Joshua Beavan.xxxxxxxx

*Please note all future updates will be shared via Fiona's Journey please use the menu to the left to view these posts.