Two Steps Forward, One Step Back
Day 18 in the NICU and we have made some progress, and then stepped back a little bit. After having the tube in her mouth, the nurses decided to switch it to her nose instead because she wasn’t closing her mouth which was causing her lips to dry too much! Once it was in her nose, it kept suctioning out the bile in her tummy that was just sitting there and not getting through her intestines. Eventually when levels of bile were low enough and they had diminished in green colour, the doctors gave the go ahead to start feeds! With everything going so well up to date they started her at 5mls and going up 2mls every 6 hours. We were able to get up to 18 mls before she started regurgitating thick green bile. This meant her belly wasn’t able to handle the amount of fluid being put in due to slow digestion. They stopped feeds to give her stomach a break. We did this 2 more times and she only got up to 5mls before she began spitting up bile again.
The surgeons then decided to run some tests to see what was happening on the inside. The first test was bloodwork to make sure there was no infection! She passed this test. The second was an X-ray, which they noticed her bowel appeared “gassless”. This was not good news but she had been having bowel sounds (gurgling), passing gas, and having the occasional stool. The surgeons decided to not count too much on the x-ray and try another procedure. This last test consisted of a tube being placed up the bottom end and injecting fluid into the bowels that could be followed through an x-ray screen! The fluid went through the entire intestines which was the best possible news we could ever receive!! It meant that there were no blockages (no second surgery required). Currently we are off of feeds, and waiting patiently on her bowel to decrease inflammation so that it can start moving things through easier.
She has been a trooper, and is trying so hard everyday to have a bowel movement. Other than the inflamed bowel loops, she is in perfect health and it is just a matter of giving her little belly TIME to heal. Time is everything and it has been so challenging to wrap my head around the idea that we could be here for another few weeks. What is helping me cope with the unknown, is thinking of the day I’ll get to bring her home and spoil her with all of the milk she wants. These few weeks or months will be nothing in the big picture as we have an entire lifetime to enjoy each other.
It is completely normal to feel hopeless at times. Staying strong for your little one will help them heal! Lots of snuggles, skin to skin contact, and talking to your baby will let them know that you’re by their side fighting this with them. Even with two steps forward and one step back you’re still moving in the right direction. Your mindset is so important❤️
Reminder: No two babies are the same and the journey will vary for each child! What works for one baby may not work for another. These blog posts are to help parents who are going through similar situations and or will be eventually.
XO