Four Weeks Post Op

Here are a few pictures of Alex one month after surgery. The stitches on both sides of the tongue are slow to dissolve, but the swelling continues to go down! Alex has been doing great and has shown so much improvement after surgery!

Two Weeks Post Op

Here are a few pictures of Alex two weeks after surgery. He has been drinking out of his normal bottle since Tuesday and he is back to his normal eating and sleep schedule. He still has several stitches in the tongue - especially along the sides, but the swelling has decreased significantly. 

One Week Post Op

Here is a picture of Alex one week after surgery. 

Day 5 Post Op

It's finally Tuesday!! I have been waiting for this day before we even arrived in St. Louis ten days ago. We were discharged from the hospital this morning around 10:00am, perfect timing to enable us to return the rental car and have lunch at the airport before we board our 2:00pm flight back to Denver. 


Alex has been feeling great. He is already back to putting everything in his mouth as you can see in these photos. Luckily, the fries he kept grabbing off of my dad's plate did not have salt on them - ouch! ... And he will have to wait MANY more years before he is allowed to have his first glass of wine :)


Alex has made huge improvements in his ability to eat solid foods. Drinking out of a bottle is still a challenge, but I know things will start to improve once the swelling in his tongue starts to go down.

Day 4 Post Op

Alex woke up this morning in a great mood! He was grabbing at his feet and babbling to himself. He is back to his normal self and looks great. He is on infant ibuprofen every six hours and only gets fussy 15-20 minutes before his next dose of medicine. DeAnn fed him a half jar of carrots and he ate without much protesting. He is now eating 3-5 ounces of formula every 3-4 hours. We were moved from the PICU to the floor and will be discharged from the hospital tomorrow morning. I read that many babies start to get pretty bad breath from the smell of the dried blood on the tongue, but so far we haven't experienced this. We have been told that Alex's tongue has healed very well -- it looks much better than I expected it to!

Day 3 Post Op

Alex was placed on a nasal canula last night to provide continuous oxygen while he slept - this helped reduce the number of desaturations he had throughout the night. He was started on bolus feedings, but he had a high residual from his midnight feeding (meaning that he wasn't digesting the formula) so he was placed back on continual feeds (small amounts of formula that are continually pushed through the feeding tube). His digestion started to improve in the early morning and around 8:00am DeAnn stopped by and agreed to let us try bottle feeding. 


For the first feedings you need to hold your little one very firm so that they can't wiggle away. With all of the stitches and swelling in the tongue, the bottle feels weird to the touch and many babies don't like the sensation of the bottle in their mouth. Alex didn't seem to be in pain, he has been chewing on his blanket and hand since yesterday. I won't lie. For the first few feedings it feels like baby torture. Like water-boarding your infant.  Alex screamed and tried to thrash around... but eventually they calm down and are so hungry that they give in and drink. 


DeAnn was great about explaining how to hold him and providing techniques for getting him to swallow. She provides a special kind of bottle that you squeeze to provide small amounts of formula to the back of the throat, which is great for those kiddos that don't want to (or can't figure out how to) suck using their swollen tongue.  Alex resisted initially, but he drank two ounces of formula. We will be feeding him 2-3 ounces every two hours throughout the day. 

Day 2 Post Op

This is the day that most kids are moved from the PICU, the pain medicine is weaned to Tylenol only, and they try to start bottle feeds. 

Unfortunately, due to Alex's breathing, they are taking things slow and we are staying in the PICU another night. They will not be trying bottle feeds until tomorrow. The amount of formula Alex is getting by tube feeds continues to increase (he started at 5 ml/hour, to 10 ml/hour and is now at 20 ml/hour) and he was more alert today. He played with some toys and cuddled with me in the recliner most of the day. They were able to take out the nasal trumpet which made Alex feel much better!