From the moment we found out we were pregnant with Connor we started receiving advice from everyone. Lots and lots of advice. Yet, the best piece of advice we received came from my wonderful mother-in-law, Sue: “At the end of the day don’t listen to anyone but yourselves. Trust your own parental instincts.” This little morsel of wisdom has been very true with JD.
Nate and I have been very vocal about our feelings regarding the OG Tube. For months we felt once we removed the OG tube from JD’s throat he would be much more comfortable. We agreed with waiting on the G-tube the first time around (we wanted him to be bigger) but this time we knew the G-tube would be the game changer. And we were . . . right.
JD is recovering magnificently. While he was in a bit of pain in the beginning he handled it like a champ. Less than a day after surgery he was breathing so well they took out the nasal cannula. Once the cannula was out his saturation levels were around 98, 99, 100 ALL BY HIMSELF. We have not seen those numbers without a cannula in a long time. He is a brand new baby. His heart rate is right on target, his respiratory is more consistent, and his oxygen . . . well it is outstanding. Before surgery we were lucky to have his saturation around 94 at the high end. After surgery he hangs out around 97 at the low end.
Plus, it is well known I am not a fan of ophthalmology and their horrible eye poking pen-like machine they shove into JD’s eyes. However, after they did their test in the OR his eyes are better. They did not do a procedure just a test and yet his eyes seem to be more in sync. It does not make sense to us but his left eye appeared to be larger than the right eye before surgery . . . and now the left eye appears to be more even with the right. Honestly, a brand new baby.
Finally, within 24 hours post surgery JD’s physical development soared. He started pulling his hands midline to grab toys and blocks. These are little things taken for granted when babies hit developmental milestones along the way. But the minute a baby is even a day late hitting a milestone any parent will start extra “playtime” in the hopes to “catch up.” While we know JD will develop slower than scheduled that does not mean we don’t expect the best from him. When we are in the hospital it is easy to forget he needs the same playtime experiences as Connor needed. Therefore, when JD holds a soft block in his hand for 5 seconds I will continue to call in every nurse and PT employee I can find to show off. This kid will do amazing things in the future but it starts with holding a block (no pictures holding the block I was too excited to grab the camera).
|Why is mom so happy I am grabbing this silly bear - it's not that hard|
The King Has Spoken
Neurosurgery stopped by yesterday to give us some good news - we can start weaning the collar! Hip, Hip Hurray!
Step One - Take an x-ray to get a baseline look at his neck
Step Two - Take the collar off for one hour each day this week
Step Three - Increase the collar-free time to two hours each day next week
Step Four - Order another x-ray of his neck to compare against the first x-ray
Step Five - Create a collar plan with Dr. A moving forward
JD does not know what to do with himself when the collar is off. I think he is worried if he makes any sudden moves we will put the collar back on. Instead he looks around slowly while I try to encourage him to put his hands up to his face. Oh my goodness, he is one handsome little peanut.
Updates from Rounds
As I sat on the ground playing with JD in his bouncy seat the doctors came in for rounds. Monday introduced us to our 5th new Attending, Dr. F. We have actually encountered this doctor in the past with really good results. I have faith this is will be our last attending while in the NIUC.
Sleep Study: Preliminary results show JD still has mild to severe obstructed sleep apnea (a slight improvement over the last test). The sleep study started without the nasal cannula then halfway through they added a cannula to test the difference. The attending would like to discuss the results further with the sleep doctor rather than rely on just reading the report. Bonus points for Dr. F!
Feeding: Over the past few days they have started his feeding through the G-tube with positive results. It started off slowly with 5mL over an hour every hour for 6 hours. Then up to 10mL over an hour every hour for 6 hours and so on up until 25mLs. Once he reached 25mLs they moved to spread the feedings out to give his stomach time to hold larger quantities of food. Currently he is up to 50mL over an hour every two hours. If all goes well by Thursday he will move up to his full feeds (approximately 75mLs an hour every 3 hours) at which point they will monitor him until Monday.
Follow-ups: As with the first time we left we have many services following us, therefore, we will have many follow-ups. My hope was we would have some of our original follow-ups while we were here in the hospital . . .however, they love JD so much they want us to come back for outpatient appointments again and again and again. Right now, the resident is working on scheduling more of our appointments together in blocks. If the schedule stays as is I will be back at the hospital 8 times in two weeks. Goodness.
On the Launching Pad
The engines are not yet fired up but we are on the launching pad to come home. We will be at Lurie’s at least until next week as they monitor his ramp up to full feeds. Plus, Dr. F wants to talk to the sleep doctor about ensuring he remains safely breathing at home. That teeny tiny light at the end of the tunnel just got a little bit bigger.
|All I need is a gold chain to complete the look|
One final thought, I want to send a humongous hug and thank you to my bestie (former) co-workers Tracey and Kristin. Even though the 3 of us have not worked together in almost 2 years you ladies continue to be there for me everyday. From your texts and emails and phone calls and visits and food drop offs you have given me virtual hugs every single day. All the planes rides, late night crunch sessions, the HOURS and HOURS of conference calls, the pages of edits, the thousands of client presentations, the Starbucks venting frustration meetings, PAWS, and lots of wine have left me with extra wrinkles but most of all fabulous friends. Thank you for keeping us in your hearts even without seeing each other everyday. It sure makes all the tough times at work worth it. We will always been family.