Our journey so far: We found out that we were pregnant with our second child in May 2014, we were overjoyed! A few people joked that I was pregnant with twins, but at my 7 week dating scan all looked good and we were prepared for a singleton pregnancy. It wasnt until our 12 week scan that we found out we were having identical twins! Our joy soon turned to fear when we were told that there were concerns surrounding twin 2, we were referred to Monash clayton. At 14 weeks we finally had our first of many specialists appointments and found out our twins were high risk and had the potential for complications-for us they found them to have unequal sharing of the placenta and a risk of twin to twin transfusion. This meant fortnightly trips to monash with scans and testing each time. The unequal sharing of the placenta meant twin 2 was considerably smaller than twin 1 in all aspects of fetal development- he was always measuring 2-3 weeks behind. Things were going along ok considering, until we reached 24 weeks when scans showed the blood flow to the umbilical cord in twin 2 wasnt great-this resulted in more frequent trips to monash and further scans. By week 25 there were concerns to the blood flow to the duct (valve in the heart) of twin 2 as well as the blood flow to the umbilical cord. At this point we were told we may need to deliver in days or we would lose twin 2 and potentially lose twin 1 as well I was terrified! I was given 2 lots of steroid injections to help develop the lungs in both babies and on monitoring and scans every second day. We were given ultimatums that carried extremely high risk to the lives of both babies and didnt have a clear cut answer on what to do. If we didnt deliver we would lose twin 2 in a matter of days and run the risk of losing twin 1 as they shared a placenta and if we did deliver we could lose twin 2 and twin 1 due to the risk in prematurity especially for twins. What we were going through was hell-an emotional rollercoaster. We went down to see the neonatal unit and spoke with a neonatal specialist where we were told the risks in delivery this early and the survival chances. Seeing those tiny premmie babies really hit us hard and the reality of our situation became all to real. We made the decision to deliver our babies and try and give them a chance to survive. Only 3 hospitals in Victoria can cater for babies born prior to 34 weeks and the monash was full, they tried to transfer me to the royal womans who also couldnt take me so eventually I was transferred to the Mercy. On Wednesday the 29th of October our identical twin boys Luca and Elijah were born: Luca (twin 1) was a tiny 1150 grams and Elijah (twin 2) a mere 748 grams! I got a glimpse of my boys before they were whisked away so they could be stabalised. Both boys started on cpap but the first night required the highest level of ventilation through a breathing tube in the throat. The next day Luca was able to go back on cpap but Elijah was having a tougher time and had to stay on tubed ventilation. By the Friday at just 2 days old the doctors were showing concerns for Elijah- they got a heart specialist in from the Royal childrens and did a heart scan the results werent good. Late Friday night we had a meeting with the heart specialist who told us of the news. Elijah had a coarctation of the heart and two holes in the heart -without surgery he wouldnt survive but he was far too small to undertake the complex heart surgery. We were beside ourselves and devastated. The coarctation of the heart meant the main valve to the aorta was too narrow to distribute the blood flow to the rest of his body and the only reason he was still alive now was because the ductus valve (a valve that closes in everyone at around 28-29 weeks gestation) was still open and making up for the aorta. The solution for now was to keep the duct open with medication to allow Elijah to get big enough to have the heart surgery. Going on this medication meant that he would be unable to have any milk feeds and had to get all his nutrients through an iv drip. Once we were dealt that blow we had another 3 days later. On the Monday more concerns were found with Elijah- he hadnt had a bowel movement since birth and his tummy was large and had changed colour. The diagnosis through tests was a perforation of the bowel-that Monday the 3rd of November he was transferred to the Royal childrens for surgery on his bowel. With meetings with the surgeon and medical team the diagnosis was not good-we were told we would probably lose our son that night I cannot find words to explain how we felt and the agonising wait we had ahead whilst Elijah was in surgery. Finally at around 11 Elijah went in for bowel surgery, I couldnt walk I felt like I would be sick and we couldnt stop crying. We had been told so many times our boy wouldnt make it but this time was the worst. Finally at just past 1 in the morning we were told our son had made it through-tears of absolute joy streamed down our faces our boy had yet again defied the odds. Little Elijah still had a way to go and part of his bowel was now on the outside of his body with a bag as this was the safest way to quickly fix the perforation. We got to the 12th of November and little Elijah had developed severe lung disease-this is one of the main complications with premature babies. Elijah had more factors which had made his risks worst. They didnt anticipate for Elijahs to be so bad and thought his heart condition was contributing. One of the best micro heart surgeons was at the Royal childrens and had an opening that day we had a small window to act and needed to now. He hadnt reached anywhere near the weight he needed to be but he had to have his heart surgery to give him a chance. The exact words from the surgeon were-you realise Elijah could die tonight. So our little man only 2 weeks old and already on to his 2nd major surgery. Again we went through the agonising wait and were prepared for the worst and again our little man defied the odds and showed us he needs to be here! Meanwhile Luca was going along nicely and now on to high flow and gaining weight beautifully. Poor little Elijahs lung disease wasnt improving as they had hoped it would after the heart surgery again we were faced with an ultimatum-if we didnt get him off the ventilation and on to cpap he wouldnt make it. We had to make the decision to give him a 2 week course of steroids to hopefully give his lungs the help they needed. The steroids came with risks but we had to do it to give Elijah a chance or our little man wouldnt make it-we also had the chance that the steroids wouldnt work at all. After only a few days of steroids we got the news we needed Elijah was on cpap!! Throughout this whole ordeal we had never even held Elijah, but that incredible day came on the 30th of November he had been here for over a month and I was only just getting to hold him-tears of pure joy streamed down my face. Little Luca was going along nicely his high flow was getting reduced, he was gaining lots of weight and we were getting cuddles. Another huge day and big milestone was just recently on the 5th of December when Luca was transferred to an open cot and able to wear his first outfit! Elijah still needs surgery to put his bowel back in and possible surgery on the two holes in his heart he is currently just over 1000 grams. Luca is on a high flow of 4 and is nearly a whopping 2kg he is 1960 grams. We will continue to post so you can be informed of the babies progress. Elijah is in the Royal childrens hospital due to requiring further surgery and Luca is in the Mercy neonatal unit. We live in country Victoria and have to travel 2+ hours 2-3 times a week and go to 2 different hospitals which are another 30 minutes apart to see our boys whilst juggling our 2 year old daughter. Times are hard and to say we have had a difficult time the past few months would be an understatement and we still have a long road ahead but we know it will be absolutely worth it in the end!!
Posted on: Sun, 07 Dec 2014 11:01:31 +0000
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