Day 9: And so the honeymoon is over. I should have known it would be a bad day…. It all started when the cow slept in! The alarms were all set, for every day except Sunday and today just had to be Sunday. We got to the hospital around 10am and after a mini panic from me for being late we settled into the usual morning routine of saying hello to the twins and setting up all the things we would need for the day. Today however the Drs were late for their rounds so we hadn’t actually missed anything. The paeds came around and noted that Aiden had been having more frequent oxygen desats, periods where he forgets to breathe and his heart rate dropping (from now on I am just referring to them as A’s&B’s which is apnoea and bradycardia), some of these episodes self recovered, but a few required stimulation – this is despite his caffeine being increased the day before. The paeds decided they would look for infection and consider some respiratory support (but they had to discuss this with the consultant). The bloods were taken. Next we cross over to Miss Abigail. Abigail copied her brother over night with her own sets of A&B’s requiring stimulation and her sats were often at 88%, her work of breathing overnight increased as well, and her high flow was turned up to 7 litres of air. She had periods where oxygen was on and then off and then on… I voiced my concerns with the Paed that were bugging me yesterday about her high flow. Abby was ordered bloods to rule out infection as well and also a chest x-ray. The paed was doing her full assessment and also noted that Abigail has a heart murmur that has not been picked up before now. She has been ordered an ultrasound for tomorrow, so we will find out the management plan then. Safe to say this mornings paed round was upsetting and not what we were hoping to hear for the twins. We took a moment to absorb the information and decided to go to the family room to have a second together. When we returned Aiden had been commenced on high flow in 5lires of air. It was awful to see him back with machinery but also better to see him struggling less. Abigail was about to have her chest x-ray done as we were walking in. While we waited for the results of the bloods and chest x-ray we had a chance to find out about Aiden’s weight (he was weighed last night – Abby will be tonight) Aiden lost another 63g since his last weigh, making him now 1092grams. We also looked over their feeding regimes. Aiden was increased to 16mls every 2 hours of fortified breast milk and he is tolerating this well at the moment. Abigail also increased her feeds to 7mls every 2 hours and her aspirates are getting smaller, she seems to be tolerating her current feed regime as well. The twins blood results came back and thankfully there was no indication of infection at the moment, this is great news. Abbys chest x-ray results also came back and showed that Abbys lungs have had a collapse. This is not great news. The paed explains that as there is no infection, it is likely that Aiden is just tired as he as been working hard to breathe on his own for a while now and his systems are all still immature. The paed also explains that it is not uncommon to see collapsed lungs in premmies with lung disease, like Abigail, and that increasing her respiratory support should help to open her lungs up again. We are told that Abby will go back onto cpap. Abigail is fitted for her cpap all over again… I wasn’t there for their birth, I didn’t see them ventilated, I didn’t see the change over to cpap… today as I watched this happen, I cried. Abigails cpap was recommenced at 7 lires in air, and her oxygen was weaned down to 21%. Both of our twins have been working so hard and are putting up such an amazing fight. We are so proud of them. Today has been a big day for our precious babies and also a big day for us. I have read countless premmie blogs and other sources of information and you often hear the term “the nicu roller coaster” or the saying “one step forward two steps back”. So far we had been so lucky that the kids had just coasted along and today those words were no longer terms or sayings, they became a harsh reality check. So as I lay down to sleep tonight, I hope and pray for a better day tomorrow.
Posted on: Sun, 21 Sep 2014 12:40:56 +0000