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Sleeping

Liam has now been with the angels for three weeks, the last few weeks have gone so fast, ever since our little man joined us in this world, and it seems every minute that passes widens the gap between us and our brave little warrior.

Steve and I still seem to take turns grieving, on the days I am in a mess he is always there to pick me up and I am there for him. Liam made us bond in a way I never thought was possible between us, we are closer then we have ever been and understand each other without the need for words. For our son's sake we will never lose this closeness, it was a gift he gave us.

Liam's clothes still hang unused in our wardrobe, and his moses basket in the corner of the room. The time will come I am sure when we will pack these away but for now I like to see them everyday. His ashes have come home and sit between us on the coffee table in the front room, it makes me feel much closer to him to have him here, much better then to have to go visit him somewhere, he is home where he belongs. When I first started this blog I wanted something to be around after Liam had gone, but now it seems more of a quest to make as many people as I possibly can aware of Edward's Syndrome and the lives these children can live, to give hope to people in the middle of what is such a desperate and scary time. Liam and I have already helped hundreds, (and this is no exaggeration), of people understand just what Edward's Syndrome is and I have had the honour of becoming close friends with families that are at the end, in the middle or just starting out their journeys with T18.

Whenever there is a rare disorder there is always a hell of time looking for information on the subject and it was no different with me when I first went looking, I did discover the SOFT website but at the time it seemed a little 'user unfriendly' but since has had a massive face lift, providing so much more information and real stories on our families. Liam now has his picture on the front page and a star named for him further in the website.

Liams Balloons

Today I woke feeling quite peaceful and at ease with things. Another hard day was beckoning as we had more things to do, but I felt the hardest tasks had already been tackled. How wrong I was. Everything is hard, choosing flowers ended in me walking out yet again and leaving my parents to finish up when I could take no more, thank heaven they are with us or nothing at all would have been done, I love them dearly and have so much admiration for them for putting aside their own grief to support us in ours.

The last stop of the day for us today was to organise the balloons, I wanted to release 23 balloons for Liam, one for each day of his life we chose rainbow colours, a symbol of SOFT and of his T18 friends. 

plaque

The last two days have been spent arranging Liam's funeral. Just when you want to curl up and die in corner you find yourself with what seems an endless list of things to do. Our first stop was to see our little man at the hospital, which I thought I had prepared myself for, but no, seeing him and cuddling him again smashed my already broken heart into little pieces. I so wanted to take him home right there and then but we were told that we couldn't really have him until the night before, babies are too little to be embalmed, you can guess the rest. We picked up his death certificate, in the same office as we had registered his birth only days before.

We went on to buy Liam something to wear, he had been dressed in the hospital beautifully and lovingly by Laura but we wanted to pick out an outfit for him ourselves, other than a few things here and there we had never really bought anything my whole pregnancy, and the things we have we wanted to keep. Steve bravely told the assistant in the shop what we were looking for and just how little Liam was, even the premmie clothes were too big for him starting at a weight of 5lb. We decided to buy a little set, complete with shawl, that look like pyjamas. I like to think of him as sleeping and his funeral as us saying goodnight, so pyjamas seemed very appropriate. The whole shop was looking across at us as we tearfully made our way to pay, in fact I had to leave as seeing all the things we wanted to buy but couldn't was far too much.

After this we went to the funeral home, on the way I was thinking how even though we had known this day would come Steve and I hadn't really talked about what we wanted, I wondered quietly if he would want the same things as me, would we start arguing over silly details with the stress of it all. I needn't have worried, every time we were asked to make a choice we both made the same one without a word being uttered between us, we are so in tune with what we wanted for Liam from the start and this hasn't wavered any now. 

Enough for one day we headed home, and I sifted through poems and music all night, trying to chose what we wanted for our little man, this time Steve was overwhelmed and so we gave up for the night and went to bed. 

goodnight

Last night Liam chose to join his T18 angel friends up in heaven and we had to lay our precious little man down to sleep for the final time. Monday started like any other day since Liam has been here, we called the hospital early to find out how he had been overnight. We were happy to find out that Laura was back on duty today and that he had done fairly well overnight as usual, ups and downs but nothing out of the ordinary for him.

When we arrived Laura told us that his blood gases had dropped a little again, and they were looking to give him another transfusion. His Sats had also dropped slightly, and his pressure had gone back up to 28. This came as a bit of a shock as he had only just been re-intubated and up until then had been blowing the lid off the Sats, hitting high 90's all night we thought his pressures would have gone down not up. 
We agreed to another transfusion, hoping this would settle the gases and the Sats, and he could return to low pressures. Liam had been quite perky all morning, so we thought we would act fast before things dropped too far, we left just as he started his transfusion, not a pleasant thing to watch, and told Laura we would be back after some dinner.

When we arrived back at the hospital Laura came running out and asked us to come straight in. Liam had suddenly taken a turn for the worse, no more than 10 minutes ago and they had to up his pressures again, as high as they had ever been. Even with all this and 100 percent oxygen he was de-saturating at an alarming rate. The ventilator could not deliver nearly enough oxygen and so they had to keep switching from this to 'bagging' him, basically forcing the oxygen into his fragile little lungs to keep him with us. They had also upped his morphine from 10 to 30 percent. desperately trying to calm him a little and raise his Sats.

The minute I saw what was going on my gut wrenched and I told Steve they need to stop. Laura quietly told us that they were trying to buy him a little time, so we could spend a little longer with him. I waited anxiously, watching the numbers go up and down on his monitors, thinking all the time get away from my baby. After what seemed like hours, the morphine kicked in a little, and he calmed enough for us to be able to hold him, while Laura sat and vented him manually.

Liam was wide awake despite the morphine, his eyes were wider than I have ever seen him open them before. We took turns in holding our little man, mummy, daddy, nanny and grandad, and finally his big brother Lee before he was handed back to me for the very last time. Steve and I cuddled him close for a few minutes before we finally asked Laura to stop ventilating.

I asked Laura to please dress him, which she did with as much love and care as if he had been her own. Once dressed he was handed back to us for his final minutes on earth. Through all of this Liam's eyes had remained wide and alert, looking first at his daddy and back to me, he knew he couldn't stay any longer and gazed at us to the very end. We whispered softly to him, that we loved him and it was ok to fall asleep, his eyes flickered shut and then re opened slightly for one final peek before he left us, peacefully and quietly he drifted off into eternal sleep.

Liam

We have reached another celebration day for Liam, of course every day is a celebration for us, I am so glad we have got to spend this time with him, back when I found out I was expecting a baby with T18 I didn't dare believe we would get this far. 

After another couple of rough days and another blood transfusion our brave little soldier is doing well and keeping his oxygen levels up. I am a little concerned right now that they seem to up his pressure so quickly when his Sats fall, yet it takes them days of good numbers for them to go the other way. 
The other thing bothering me is that although he achieves 90 percent often, because the 'norm' is 95 they ignore it as a good thing. I know from my T18 mummies that a lot of their children are in the 80's rather then the 90's so I have asked Liam's doctor to go back to the cardiologist with a view to working with the lower figures, maybe it will work and maybe it won't but I have to have exhausted every avenue, I don't want to have any regrets about what I did or didn't do should the worst happen.

I also persuaded her to take him back off the morphine, now he is hitting higher levels and is over his transfusion I can't see the harm in trying this again, last time his sats improved a lot and they were able to lower the pressure of his vent. I know it seems to be the only thing in my mind right now, but if he stays on the vent much longer this high then his lungs will continue to decline. I need to give him the chance to improve in the short window he has before the 'down' day is upon us again.

us

After Monday's downward turn, Liam has done well the last few days, so we were upset this morning to find out his oxygen levels had dipped again and his pressure had been turned up from 25 to 27. The only thing we were thankful for was that Laura again was looking after him, we trust her with our son, which is no small statement where T18 babies are concerned.

Laura called us just before we left for the hospital to say that Liam was still only showing Sats of 60 to 70 percent, she had spoken with the doctors and they would be there to see us when we arrived. This is the first time they have rung us at home, we went in expecting to see Liam in a bad way as he was on Monday. As it turned out he seemed very peaceful and comfortable, and shortly after we arrived his Sats went up to 70 to 80 percent. The doctor was still not happy with this and so gave him some medicines to help, he is on bicarb 4 times a day anyway so she gave him some saline to boost the oxygen levels. It had no effect on his Sats so they upped his pressure again to 28, this brought him up to 85 percent, still not enough to make them completely happy but enough for them to let him be for now.

The consultant came round and asked to see us again, after Monday we expected him to ask us 'What we wanted to do' yet again and to tell us they cannot 'do' any more, the same spiel as three days ago. The words dropped out of his mouth like a stuck record, I repeated my lines from Monday and told him that we hadn't changed our minds at all. My son deserved a chance to recover from this latest blip and we were not about to 'pull the plug' on him. I have never heard anyone stutter and mumble so much in my life, I wanted to stand up and slap him around the face so that he spoke properly, after five minutes of it I am afraid I lost my temper somewhat and stated our wishes again in no uncertain terms. 

Afterwards Laura came to us and told us there had been a misunderstanding, that he had not in fact been asking us to take his vent away but about resuscitation and how far we were willing to go. Yet again our angel has come to the rescue, but why is it necessary for a nurse to come to the doctors rescue??

liam2

Two days ago we so very nearly lost our little man. We had phoned up as normal first thing in the morning to be told that Liam had had a settled night and all was fine. We turned up at the hospital as usual and I let Steve go in and went down the hall to pop the steriliser on. The scene that greeted me as I walked in the neonatal ward made my blood run cold. 

Steve was sat with Liam as usual but looking very worried, there were nurses and doctors gathered around his bed and every alarm that could go off was sounding. His heartbeat had gone from a steady 145bpm to almost 200 bpm, his oxygen levels were struggling to stay over 60 percent and his blood pressure had dropped to half the usual reading. Liam's little chest was heaving up and down and he was twisting and turning in his cot, as if he was in real pain.

The doctor asked us for a word and ushered us into that damn side room again, then went on to tell us what had been going on. After his blood transfusion Liam had not responded as they expected, his heart was having to work so hard to push the new blood around and because of his heart problem some blood had leaked into his lungs making it even more difficult for him to breathe. The doctor had administered a medicine to try and drain the fluid build up but told us Liam was not reacting well to this either, he went on to say that they had done all they could now and we should seriously think about taking Liam off of the vent before was in too much pain. My heart shattered into a million pieces, I didn't want to lose my little warrior but the last thing Steve and I want ever is to cause him any pain, we went back to sit with Liam for a while and thought about what the doctor had said.

We decided that Liam looked like he wanted to let go, he wasn't the same baby we both have seen every day for the last 18 days, he truly looked as if he needed our help to go on his next journey. We called everyone who had not yet seen Liam, and those that had, telling them that they needed to come and see Liam for what might be the last time. 

As I sat and stroked my son's tiny hands I remarked that he seemed very hot, so decided to take his temperature. The reading was 38.6, much to hot to be under the blanket some idiot had tucked round him, so we took it off. Around this time the hospital administrator came in and asked us if we wanted to stay the night, that sealed the deal for me, to be offered a bed in the hospital meant my little man was very, very poorly. I sat with him, trying to settle him for the next hour, I wanted to tell him that he didn't have to struggle anymore and that it was alright to let go but the words would not come out. 

Screens had been placed around his cot so that we could have some privacy and the usual restrictions of 2 to a bed had been lifted, there were so many of us in there that I decided to take a quick break and get something to drink with Steve while his nanny and grandad sat and held him.
When we returned Liam seemed to have settled down a little, the machines had stopped alarming and more importantly he had stopped squirming around. My older son Lee had arrived by then, and was sat silently next to the cot, his eyes fixed on Liam and a single tear rolling down his cheek. It was almost to much to bear, I hugged my firstborn tightly and we watched Liam sleeping together. 

As the day wore on Liam seemed to pick up, his temperature had dropped back down and his sats were looking quite good compared to earlier. I had checked through his notes at this point to see for myself what has been going on. I was alarmed to read that his temperature had been up for four hours previous to our arrival, all this time had been spent under a blanket. The drug he had been given to reduce the fluid had only been given to him an hour before we had seen the doctor, so the fact he had not been responding to it was quite obviously because it had only just been administered. This consultant, like all the others had been asking us to euthanase our child, when he hadn't even been given a chance to fight, not a day, not even a few hours.

cheeky

The last couple of days have been hard, Liam has been having more downs than ups and the little bit of progress he made has been halted. Although his pressure has not been turned back up as high as it was, it has gone up a little but his Oxygen levels have gone up a lot, from needing just 41 percent 2 days ago to 85 percent again today. He has low iron and calcium levels so will be receiving some calcium tomorrow, and had a blood transfusion for the Hb yesterday. Time will tell if this has helped him any.

Due to the fact he had a transfusion they put him back on morphine this morning, which is probably one reason his oxygen levels have increased, it also made his blood pressure dip quite low, but after his nurse had altered the morphine to a lower rate that has now come back up to normal. The NICU seems quite empty the last two days, a lot of the babies there have now moved along to the SCBU as they have improved and don't need as much care, this in itself is upsetting as he still remains firmly fixed in the top corner of the unit, and is showing no signs of improving any time soon. 

A little girl born two days after him, who was due the same day has now also moved, it just brings it all home again how hard our little man has to fight to even stay in a stable condition.

He has Laura looking after him today, she is by far the most compassionate and helpful nurse on the ward, and Steve and I feel so safe when she is around. The fact she has cared for two babies who have had T18 before also helps, even when she tells us that they didn't make it very far, her honesty makes her even more great in my eyes. I am pretty sick of people side stepping when we ask things. Liam also celebrated his 2 week birthday yesterday, I actually would have been 33 weeks pregnant today, it seems so very odd at times that he is here so very early, but what a strong little man he is to have come this far.

I have just got back from seeing Liam, on his notes was written, 'must speak to parents again about continuing care'. Whats changed since yesterday? Nothing. Was tempted to write back 'Must speak to doctors about changing their attitudes'

Liam was diagnosed with Edwards Syndrome (T18) at 15 weeks, we were offered a termination but decided against this and to let Liam choose his path in life. Liam was born 9 weeks early, weighing just over 2lb and fought for all he was worth for 23 precious days before growing his angel wings. This is his story...

This was originally published as a blog during my pregnancy and Liam's short life. I have kept it in its original form as it tells the story so much better than I could now.

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