Adele - posted on 04/22/2009 ( 3 moms have responded )
I too have a heart angel. 5wks before my 4th child Sean was due to be born they told me there shouldn't be red and blue blood mixing in that area of the heart on the ultrasound, a rountine check up for me as I was on steroids to keep my chrons disease in check. I tried to stay calm when explaining it to my husband that I have to go for another ultrasound at a different hospital the next day. This showed my baby had a huge hole in his heart and he wont survive, and if he does he'll have downsyndrome. My husband and I were already on shaky ground and I had 3 other children( 5, 2,and 1) to look after. Petrified I was sent to Sydneys Childrens Westmead Hospital to see a peadiatric cardiologist, who told me he had hypoplastic right heart syndrome and dextro-cardia and there was a slim chance of survival and that I will be having this baby at Westmead Hospital via csection. The next few wk went by I was in a daze. Then the csection Friday 09 May 08 came no problems, I was awake, and as soon as I heard him cry I cried. The minister christened him straight away while 20 doctors and nurses worked over him and my antheasiest video taped it all. My husband went with Sean and I went to recovery. Just before they took my baby to the childrens hospital they bought him around for me to see, I held his hand and told him to be strong and that I love him with all my heart.
For the next 2 days(including mothers day) I'd spend 6hrs with him, 3 days old he had his first open heart surgery that took 8hrs, his heart threw at least 3 cardiothorasic surgeons, he had Dextro-cardia, Heterotaxi (mirrored right side), single ventrical, 2 right pulmanory arteries, no splein, and a liver that went from 1 side pf his body to the other.There was nothing carrying oxygen to the lungs and that was what they had to fix initally.
All went well and 10 days later he came home for the first time. 2wks later he got bronclitious and was back in hospital on oxygen.out again 2wks later, now 4wks old.
At 3.5mths the dr wasn't happy with his progress and he was turning more purple, and so booked him in for his next heart surgery a day before he turned 4mths (the dr preferred him to be 6mths and over 5kg in weight but we had no choice, he was only 4.5kg) 08 sept 09 monday. The next day a photo company called me up to see if we wanted to get photos,and of course I did. I knew something was going to go wrong, I had to fast him from 3am and he looked fine, like a healthy baby. Taking the turn off to the hospital I said to my hushand lets turn around now and go home, he told me we cant and that he needs this, I said I dont care at least we have a few more days with him. Carrying him towards the hospital I said "why does it feel like I'm carrying him to his doom?". We signed the paperwork and put his tags on then a dr came and said 'were ready for him' and, 'I take him from here', Sean had only just started to recognise strangers and started crying as he took him out of my arms, It felt as though my heart had been cut out of my chest. In PICU 6hs later the dr explained it didn't go as well as he'd hoped and we are just keeping our fingers crossed that his arteries grow quickly. we saw him and decided to take shifts with him, I had 1st shift, in the first night he crashed at least 7 times, I held on to the end of the bed each time, holding my breath. He would fight through it. Tuesday came and his right lung filled with fluid and crashed at least 11 times so they put a drainage tube in without moving him. My husband was now in denial and was telling everyone he's doing well and will be out soon. wednesday and thursday still crashing at least 14 times a day. thursday they also found that his left lung had callapsed, his heart was rejecting the way the blood was flowing as his heart was now depending on the lungs to pump the blood up the body. My husband took over on friday I couldn't handle anymore and my hayfever was making me real sick.
The first night my husband almost had a breakdown he couldn't cope, Saturday I bought the other 3 kids in to say goodbye just in case they didn't get another chance. Sat and Sun he didn't crash then Mon they noticed really big blue veins popping up all over his chest, stomach, and face.So Tuesday they sent him down to get a CT scan with all 18 medications that he was on, they found a massive blood clot from where the central line went in(the Jugular) and continued into the main artery, they put him on medication to melt this then on Wed they found another blood clot in the fontanal(soft patch), so we hoped and prayed. Thursday I got sicker with laringitous, farengitous and Gastero and had a house inspection and my 2yr old had preschool photos to get done.
At 6pm I get a call from a dr from the hospital, come in your son has had a turn for the worse, his pupiles are fixed and dialated.So my mother-in-law got the kids and bought dinner and my brother-in-law took me to the hospital (it takes 1hr to get to) we got there in 25mins. We got the minister in to say the final prayer and the doctors asked us if we wanted to resustate or let him go during the night and if nothing changed by morning would we consider turning off the machines. We had both agreed to non-resustate and if needs be turn the machines off in the morning. 3hrs later my husband was going out for a smoke and I stayed with him, just as he left Seans heart rate started to decrease 158, 157, 156, 155 it got to 130 and I said to the nurse "it's not going to come back up is it", and she said "I dont think so", I ran out of PICU down the corridor and screamed for my husband just before he got into the elevator, we both ran back and his heart rate was at 103, the nurse asked if we wanted to hold him we said yes, and she placed him in my arms, his heart rate went up to 123 and I was hoping beyond all hope that there was a chance, but then it started dropping again, it got down to 53 and I asked my husband if he wanted to hold him, which he did . When the heart rate got to 0 I said to the nurse "he's gone isn't he", she said "yes". we held him of about another hr then he started to get cold so we wrapped him up layed him in the crib and said our last goodbyes.
I still dont get time to grieve, I'm always so busy, I really would love to go and see my sons grave by myself, hopefully soon.
Now I'm still sick due to Endometriosis and Chrons Disease and my husband cannot stand another foot in a hospital, which I completely understand but It's making it impossible for me. Our now youngest son has peanut allergies and asthma due to being premmie and our oldest has allergies and asthma and the middle has constipation overfow. Theres always some Dr appointments every week.
I feel as though I'm the backbone of this family and the floor is crumbling underneath me. I'm really good at acting and covering my feelings because if I dont everyone thinks I'm emotionally unstable, ( as all of my Aunties, mum and sister have by-pola depression), this I have been so worried about I had specialists check me out and they say I fine just stressed out, which is exactly how I feel but as soon as I start showing signs of weakness my husband and his family think I need to be locked up. It always has to be about my husband or he doesn't want to know about it. So you can see why my husband and I dont always get along. I love him dearly, as too I do all my children but sometimes I wish I could get a break.
Sean dying is by far the hardest thing in my life that I've had to deal with so far and I miss him so much. My god watch over you always "SNOWDROP".