Steven and Jennas twin boys, Archie and Henry were born on the 4th of August 2018 at 30 + 4 weeks, 66 days early. Archie, unfortunately, has had a rough welcome to the world. After birth, Archie developed a severe amount of fluid on his lungs- so severe that Archie’s neonatal specialist, nor any of the department heads from Mater Mother’s, Lady Cilento or the RBH were been able to identify the underlying cause.
Archie has endured so many tests and a lung biopsy to try and figure out what the problem with his lungs are. He was an absolute SUPERHERO throughout it all. After a very long and hard journey they finally had some answers for his parents. The doctor believes Archie has Alveolar Growth Abnormality and Alveolar Simplification. He described it as a bunch of grapes and most of the grapes have fallen off the bunch... the grapes that are left aren’t very good. There is no cure for this.
This is an update from Steven and Jenna on Archies current condition.
Steven and I met with Archie’s Doctor, Suresh on Thursday afternoon and he came to see me again on Friday afternoon. Since the beginning of last week, Archie has been working harder with his breathing. His high flow requirements have now increased from 9L to 10L and his Oxygen is averaging around 40%. Archie’s C02 output has increased to around the 70 mark. The Doctors started a 3-day course of Methylprednisolone (steroid) to try and help Archie feel a little better. In the meeting on Friday afternoon, the doctors explained to us the reason why Archie was starting to work a little harder. This is due to the fact that Archie has set a new baseline for his C02. His body has started to help him manage this new baseline, but as a result, his other organs are starting to help. When Archie is desaturating, he becomes hypoxic (lack of oxygen flowing through the blood) which makes him very unsettled and uncomfortable.
The Babies Ward we are in are bending all sorts of rules to accommodate us so we don’t have to go back down to PICU (intensive care) and will allow Archie to stay in the ward until his flow hits 3L per kilo (around a flow of 15) and his oxygen hits 50%. If Archie requires additional support to this, he will be moved down to PICU.
Although we see Archie’s doctors daily, we sat down in a family meeting to have a very real and honest conversation about Archie’s current state. This is the meeting we were told Archie will start another 3 days of steroids. The steroids are not a treatment for what Archie has (there is no treatment), which is Chronic Neonatal Lung Disease, Interstitial (Unknown) Lung Disease with an Alveolar Growth Abnormality. However, the steroids will hopefully let Archie know we hear that he is uncomfortable and this will provide some comfort to him and he will know we are trying to help ease this for him.
In the meeting on Friday afternoon, Archie’s Doctors asked me to sign a DNR (do not resuscitate) form. This is for when Archie’s saturations drop to a level where he is transferred to PICU and they will attempt to ventilate Archie and if he flatlines will provide CPR, which is not what we want them to do for Archie. This form ensures Archie will not end up on a ventilator. Archie is now in his final weeks of life.
Our Doctors have referred us to Palliative Care and their job is to help manage Archie’s pain with medication to ensure he is comfortable and doesn’t have periods of unsettledness. Steven and I will spend every day with our little superhero and making memories that will last us a lifetime. Archie has fought so hard to get to this point. Considering we were told he wouldn’t survive 48 hours, let alone a week or two to make it past 5 months of age. He is a true Miracle and an absolute superhero. We are so lucky to be able to get to know him.
Thank you to those who continually reach out to see if we are okay and ask how Archie is going. We can only get through this journey due to the support of our family and friends. We have such a great support network and we can’t thank you all enough for being there for us and joining us on this journey.
Archie has been in hospital for 162 day, with lots of additional costs each day, parking, meals and time off work. The money raised will go towards these things and also making memories such as foot casts and helping out with the cost of the funeral and hopefully some additional time off work to grieve and to allow Jenna to 'start' her maternity leave with Henry.