Touching Grass

Oh how I am so happy these days are upon us. Gideon is up to 2 hours of vent breaks a day. Yesterday we took full advantage of the warm 65 degrees in the afternoon. We put those baby legs and toes in the grass for him to feel around and connect with creation.

This is something we have been anxiously waiting for. Warm days and all the outside time, because nothing heals you better than fresh air and sunshine. When Gideon was in NICU, I asked if there was a way someone could accompany us with Gideon in his crib (and everything hooked up) and take him outside to get fresh air for once. Of course no one would agree to it, but really, I feel like easily you could have a transport team organize this. The response I received was "no, but all hospitals being built now require windows be installed so that babies do get the sunshine coming in". Not the answer I was looking for.

Which brings me to, advocating. This has been the theme this week based on talking to others who are now also immersed in the medical scene. We always say to advocate for yourself, but we really, truly mean it. There have been so many instances we have to stand up and say what we want and need. I am looking back on our notes for Gideon and the things we needed to ask about or did not know ahead of time (because who really knows until you live it).

The way our NICU situation worked, you had a variety of doctors and you may have the same attending for X amount of days, but the other may not be consistent. Our NICU stay by the way was 32 days. Basically 5 weeks. Cleft palate babies can latch and suck and take a bottle, but Gideon struggled just a little bit - I was completely unaware due to my own medical issues after his birth. He was whisked off to the NICU about 18 hours after birth - and we were given a hard time about the fact that he didn't go straight to NICU (spoiler alert, no one asked us). So he was admitted by one doctor, but then we were no longer on that doctors service. Then we had another doctor for a couple of days. Then moved to another pod and another doctor. Now the same doctors were there, they just took on different cases within the NICU. I still don't quite understand how all that works. It was the same situation with the nursing staff - very rarely did we have the same nurse multiple times. At that point it is difficult to have neutral continuity of care. The doctor we had the longest was definitely not our favorite - and we could not find out case manager to help assign us to someone different. She had an extremely wishy washy personality and was never confident in her suggestions or diagnosis. It was extremely frustrating to get any sort of direct answer out of her. In addition to the nursing and attending staff, there are residents as well who rotated within each team. One of our first encounters with one of the residents was her walking up to us and asking if we wanted to place a G-tube in Gideon again or do TPN via IV (TPN = Total Parenteral Nutrition, which is a method of feeding that provides nutrients directly into the bloodstream, bypassing the digestive system). There was no introduction, no explanation, just her telling us that we needed to decide in the next couple of hours because the pharmacy closes at 2. This is the day Daniel started hunting down doctors for answers.

So the take away here is, never be afraid to ask any questions.

Things to ask/ do:

• Request case manager information (and don't be afraid to hover until you receive this information)

• Request to speak to your assigned doctor

• Speak with a charge nurse to change nurses (because all too often there are incompetencies)

• Question everything - what medication is this? how much of this medication are you giving? what are the side effects

• Ask for alternative options, in many cases there are, they just may not be the easiest for the medical staff (and may not bring as much money to the hospital)

• Ask for a child life representative (I will share more on this in future posts) - they are here to help get you the accommodations you need (and sometimes just to bring you a snack)

• Be engaged when the staff does their rounds. Pull up notes from the day before and compare. Write down any changes they want to make and make sure they are done. Ask for follow ups on said changes.

• TAKE NOTES. Take so many notes. Names, medications, details about the day

This is not our complete NICU experience but it is a snapshot. I hope this helps you if you are also in a similar medical situation.

#NICU #trach #trachventlife #babiesonvents #cleft #cleftpalate #tracheostomy #momlife #medicallycomplexkids #ventilator #advocacy #birth #nicubaby #nicujourney