Bringing baby Michael home

When I first became pregnant my partner and I were delighted, we were so excited but unfortunately a couple of weeks into our pregnancy we lost one of our twins and from there the complications just continued! I lost a huge amount of blood throughout the pregnancy. I was constantly being rushed into holles street, whom suggested I stay in until the birth but I couldn't I already had three children at home with my two youngest being disabled. We tried to put some positivity back into the pregnancy by going for a private scan in the bray clinic and then my partner would later on that night do a gender reveal, my mother and father in law came along as well as all of our children, our hopes of putting the positive back were shattered as the lovely lady doing the scan detected abnormalities and defects some quite severe, our hearts were broken she detected multiple markers that indicated our babies life was at risk and he may be disabled. We cried our hearts out at the clinic, we weren't charged at the clinic she gave me loads of lovely photos and video's of our precious baby,and said she was writing a letter and sending her findings too hollestreet, from there we had multiple appointments every week with scans every week, and every appointment announced new findings our baby has a severe heart condition, he has dial atrial talipes, a short left bowed femur, all of these symptoms and markers pointing to some form of chromosomal disability but they didn't know exactly what! We did the harmony test and that came back low risk which was fantastic news, baby was due on my birthday the 28/08 but on the 06/08 my water's broke, I was panicked as the risk was for him coming early could be devastating, I was brought straight into hollestreet but my labour didn't start until the early hour's of the 8th, it was a quick birth, baby Michael was dark blue, he wasn't breathing not a sound... My heart raced midwifes flooded the room we were a code red, everyone was giving up until a midwife by the name of breda came in slowly walked over to my baby and started cpr she uttered the word's not today and not on my shift! This women is my hero as without her Michael wouldn't be here today she performed suction to rid the fluids and I heard the smallest cry, he was breathing, my partner held him for all of twenty seconds the time to get a photo, I was asked if I wanted to hold him but I declined I knew Our ladies children's hospital were waiting for him so I asked he go down to resuss! My mother in law wheeled me down to him shortly after my partner was already down with him! He was being examined, and poke at needles and tests he was screaming it was horrible but it had to be done, he was tiny only weighing 2 kilos, I marveled at him, I loved him so much already. The genetics team were already there they had established more abnormalities and golden har was briefly mentioned, before I knew it the critics care ambulance were loading him up, my heart raced as I knew he could pass at any moment and I wanted to be with him if he did I wasn't ready for this separation!, my mother on law rolled me outside and I Sat on the curb in my wheelchair outside hollestreet, looking at my baby in his incubator being loaded with multiple specialists escorting him too Crumlin were a team were waiting and ready for him. As they pulled off I wanted to be discharged, but I had to prove I was well enough first so I ate, and I walked I said I was fine to be there with him, the final test was I needed to inject my stomach as they found my blood was clotting and I needed a 6 week treatment, I've a huge phobia of needles but I did it, I squished my stomach together and injected myself with the necessary medication then I was free to go!, I raced to get my things ready and rushed outside to my mother in law who was already waiting in the car! When we arrived in Crumlin he was in the high dependants unit and we weren't permitted to go in, it was by far the most gut wrenching feelings I've ever felt, but we needed to step back and let doctors do their jobs eventually we we're aloud in and I remember thinking he's so strong. He was transferred up too the heart center and he was doing great he was stable our hope was building, we were swamped with specialist teams as he had so many different problems, and then his Airways started to act up his oxegen kept dipping and his heart rate followed doctors didn't know what was wrong so they transferred him to the airway ward, that night I thought we were going to lose him forever, his oxegen hit the 60s and heart rate hit the 59s, his colour was changing, he needed cpr I was hysterical, this continued for hours it got to the point that it was suggested I contact my partner and ask that he come up, it was devastating, until one doctor decided to send him down to intensive care, when he was down in instensive care the discovered he had upper airway obstruction, due to his jaw being to small and the tongue collapsing, this resulted in two failed procedures and then a tracheostomy, he's had multiple blood transfusions, he was in instensive care for weeks and has only been transferred recently back up to the airway ward! He's awaiting major open heart surgery and corrective surgery to his leg, but we've been told to start preparing our house as baby will be home in a couple of weeks! We're doing our tracheostomy training and intensive care training with the hospital, we've been told that all works need to be done before baby is home as we cannot do it when he's home due to the tracheostomy! His room needs to be modified flooring done, electrics re done in his room, plug sockets must be midway on the wall, for all the medical machines, we need to do all painting decorating, windows must be sealed, a glass door for his room, a sink installed in his room for hand hygiene as he will need regular suctions, blinds not curtains, no carpets, we need to buy an air purification device, an air humidifier, we need to tile the bathroom, floor his bedroom the list is endless we need to tile the kitchen, gloss the doors, we need to have all of works done before baby comes home, before he can come home so I am hoping people will understand our position as we've three other children two of which that are disabled with my two youngest having complexed medical needs, my other son mathis has a lymphatic and vascular malformation, which affects his immune system, he also has mobility issues and intestinal complications which affect his bowls, even if we were comfortable financially the expenses do become very overwhelming! So please help us get baby Michael home