Gestational age: 41 weeks, 2 days 

Day of life: 115 

Beckett: 6lb, 9oz 

Juliette: 8lb, 7oz 

 

This is a late update and also a short one because taking care of an infant is time consuming! 

 

Juliette got discharged last Wednesday! It has been great to have our baby girl out of the hospital, but it has also come with some challenges. She has always been very sweet and pretty chill, but started being very fussy on Thursday. We think it’s probably constipation or gas due to some dietary changes, but it has been hard to not be concerned and stressed because for so long, anything out of the ordinary was treated as a possible infection or new health concern. The constant screaming also does not help our stress levels. 

 

Being able to all be together in Beckett’s room every day has been great and has allowed us to see more of Buddy Boy. We got to hold both babies at once for the first time! It has also been hard to load up an infant with all of her accessories and oxygen equipment and be out of the house with her all day. We are slowly getting the hang of it, but it has been an adjustment. 

 

Beckett was able to make his way to full feeds and get his PICC line out! This was huge because he has had this central catheter delivering IV nutrition and meds since he was born. Him being able to get all of his nutrition from breast milk has been a huge step in his GI journey. He couldn’t get the PICC line wet, so once it was removed he was able to have his first tub bath! He hated it, but liked the second one a little more so there is hope he’ll come around. 

 

Beckett also had a brain MRI on Friday to get a clearer picture of what the damage from his brain bleed looks like and exactly what has been affected. The neuro doctor was happy with how he has healed so far and is hopeful that any possible physical impairments would be on the milder end rather than severe. Right now, we aren’t expecting any cognitive impairments. Any type of impairment stemming from the brain injury would mean a diagnosis of Cerebral Palsy, but that can take on so many different forms, from almost imperceptible to much more severe. He will have many follow up visits at the University of Iowa and various therapies to help his brain form new connections to counteract the damage from the injury. It’s still something that we won’t know a lot about until he starts developing more and moving, but we are happy that he has been healing well and are very proud of our little guy for all the progress he has made with so many setbacks. 

 

The talk of moving Beckett to level 6 of the Children’s Hospital was put on hold because his eyes were getting worse until today when there was finally some improvement. They had to increase his respiratory support to try and combat the progression of ROP and even started mentioning the possibility of eye surgery or intervention leading up to today’s exam. Thankfully, they looked a little better today, but the ROP journey can be very long and it will likely delay weaning his RAM levels, which will delay things like oral feeds and doing other things he needs to do in order to go home. We don’t have an estimate for when Beckett will be discharged, so we are trying to focus on the small wins and progress when we can.