One week home…

Ryan is such a cutie! He is starting to smile – two yesterday, one the day before and a few today. His whole little face lights up when he does it. So cuh–ute. 

Ryan has been home for one week TODAY!  Happy one-week anniversary, baby. This post from when he was a week old needs a little updating. So here are a few things I’ve learned about or confirmed about Ryan this week.

1) Ryan continues to h.a.t.e. wet or dirty diapers. He starts crying before he’s finished doing his business and cries until his diaper is fresh. Today at the pediatrician’s office he was crying and I heard him go…  she started cooing at him and held him a little while saying, ‘I’m just trying to calm him a little.’  I meekly said, “he won’t stop crying until I change his diaper.”  Sure enough, with a fresh diaper, he calmed right down. 

2) Ryan’s temper is not as extreme as I originally thought. Apparently, anti-anxiety meds can cause irritability. I noticed the lower the dose of meds, the more chill Ryan became. He really only gets upset under normal circumstances and I haven’t seen him hold his breath for weeks. He is totally off anti-anxiety meds now and is as sweet as a peach on an August afternoon. 

3) Ryan is unaccustomed to the dark. I leave the (bright) hall light on while he’s falling asleep so he isn’t afraid. 

4) Like most babies his age, he doesn’t mind noise and falls asleep (and stays that way) while his sisters bounce and shriek all around him. 

4) Ryan sucks his fingers when we let him. He has a sock on his left hand most the time so he doesn’t pull his tube out, but I notice he sucks his sock and his right hand on occasion and it soothes him.  (braces all around for our kids….) And btw, a sweaty socked hand smells exactly like sweaty feet! EWWWW!

Some may be wondering what special care Ryan requires so here is a summary of the ‘extra’ things that must be done:

For feeding –

~ Check to make sure his NG tube is in place by listening with the stethoscope on his belly while shooting 3 ccs of air down his tube. If it makes a popping sound, it’s in the right place. (note: make sure to then pull the 3 ccs back out or you will give your baby some major gas!)

~ Meanwhile, put bottle in cup of warm water to warm (after having been refrigerated)

~ Pour milk into feeding bag and prime the pump (that’s really the terminology) until all the air is out of the line

~ Hook the feeding bag line to Ryan’s NG tube and press Run

~ Supervise baby while eating to make sure he isn’t choking 

General care – 

~ Ryan’s incision from his March 5th BT shunt is almost healed, but still needs care. I am supposed to disinfect it and change the dressing daily. 

~ Ryan gets 3 meds at his 10 a.m. feeding and then a repeat of 2 of them at his 10 p.m. feeding. The nice thing about an NG tube is we don’t have to fight him to take his meds or worry he will spit them out. 

~ I work with Ryan for 2 of his 7 feedings using a bottle to try and get him used to sucking and swallowing. Today he actually decided to suck the nipple and took about 10 ccs using a pretty consistent suck and swallow pattern. It’s been pretty random most days with him getting nothing by mouth making it frustrating for both of us. 

~ I am supposed to take Ryan’s temperature daily to track if he is trending toward spiking a fever. A respiratory infection can send him to the hospital since his breathing is already so compromised.

Doctor visits – 

~ Ryan sees his cardiologist on a regular basis for an ECHO to track his cor membrane growth. This is the membrane that was ballooned in the cath lab a few weeks ago. The plan is for Dr. J to cut this out during the Glenn surgery scheduled for August. They will track it religiously until then to make sure it isn’t causing problems. We are going weekly at the moment, but hope to back off after Dr. D gets a baseline of how fast (if at all) the membrane is growing.

~ Ryan sees his pediatrician weekly as well for weight and pulse ox measurements. We will continue to see the pediatrician weekly as the cardiovascular visits taper down.

~ A home care nurse visits us 2-3 times per week. She does general assessments and makes sure our comfort level is good. 

Here are some pics of our week…