Big love

Before I start with the update I have to say something about our view:

If we're going to be stuck here we got a pretty awesome view of Forest Park!

Yesterday we got the results back from his respiratory panel and it seems we all have rhinovirus. No big shock there. Sutton has been treated with IV antibiotics and steroids around the clock since he was admitted. The IV antibiotics, according to ENT, are because the steroids usually aren't enough to help pull kids with cystic hygromas through this. We may be discharged later today with oral meds to finish at home. 

If this regimen works well this is something that we could do locally next time instead of hauling everyone up to St. Louis and leaving Cohen with family and friends. That would be a nice treat, especially if its just for IV meds. 

Big love has had quite the appetite since the steroids have gotten on board. As a matter of fact, he just finished a feed of 7.5 oz and he is still eating about every 3 hours during the day!! To put that in perspective he typically eats 2-4 oz every 3 hours if he is being bottle fed. He was 10 lbs. 3 oz. at the pediatricians office on Tuesday and may be into the teens in no time if he keeps this up! We will maintain bottle feeds until the hygroma decreases in size as he is having some trouble remaining latched and controlling milk flow when breast feeding. 

Round 3

Sutton and I spent the morning at the pediatricians office for something I never thought I would take my kid to the doctor for - a little cold. 

Unfortunately, he has become increasingly more stridulous over the last 24 hours and his neck is swollen. His vital signs were stable at the office (aside from a low grade temperature) but, after the pediatrician conferred with Sutton's physicians at SLCH they've decided to admit him to the hospital. This is now our 3rd admission. Boo. If this what August is like the winter should be super!

We were planning on coming to St. Louis tomorrow for his follow up with audiology and newborn medicine. Those will have to be rescheduled (though I suspect newborn medicine may visit him as an inpatient). 

We pray that Sutton can recover quickly with minimal interventions and that this isn't the start of him being a "frequent flyer."

Sleep tight

This little rock star slept from 9:15 pm to 5:15 am last night! 

Future tiger

Repeat bronchoscopy

The repeat bronch went very well this morning. The area of exposed cartilage on the left side of his trachea is well healed and he appears to be regaining movement in his left vocal cord. His ENT did feel as though his right vocal cord was more compressed by the hygroma, but it is still functioning. 

We will follow up with his NICU team and audiology (for an extended hearing screen because he did not pass the hearing test on his right side prior to discharge from the NICU) at the end of this month. ENT wants to see him again in early September just to follow up and see how he is growing and progressing. So far, it appears the hygroma has not grown. He has though! When he weighed in this morning he was 9 lbs 5 oz. and at discharge two weeks ago he was 8 lbs. 8 oz. We hope and pray that continues to be the case, it will certainly make things easier for him. 

ENT told us today that he will most likely need surgical intervention to remove a portion of the hygroma. This is not unexpected and, if he continues to do well, we should be able to hold off until at least 6 months (preferably a year or more though). It is just creating too much pressure on his airway and vocal cord to consider not removing a part of the mass. 

He is resting comfortably in his luxurious, semi private room. This is probably more obnoxious for his little roommate since Sutton snores :) We plan to be discharged tomorrow. 

Germaphobe

As we sit waiting for Sutton to move into recovery I thought I would write a post about my crazy, newly developed germaphobia. 

Since Sutton's condition involves his lymph system, he has the potential to have his airway compromised by something as simple as the common cold. All of us have had swollen lymph nodes at some point or another and, in someone without a cystic hygroma, this is no big deal. However, the hygroma is already compromising Sutton's airway - his trachea is still deviated even though he is able to breathe on his own - and further compromise from swollen lymph nodes could lead to another intubation or a potential tracheotomy. Both are things I don't want my sweet boy to have to endure. 

I say all that to say this: Please do not touch my baby without washing your hands. Don't grab his hands when you see us out in public or touch his sweet little face. You see, I'm now a germaphobe where he is concerned. I have a grubby, boogery two year old that I'm trying to keep from infecting him and I don't want to have to contend with strangers germs too. I have no problem with people wanting to love on my little, you just have to be clean (and not washed-my-hands-5-minutes-ago-but-I've-touched-8-doorknobs-and-3-elevator-buttons-since-then clean) to do it. 

If you're worried you'll forget and feel compelled to touch without washing, don't fret. I got a reminder sign just for you!

Our first week at home

Last Thursday, July 25th, we were set free from St. Louis Children's Hospital! We were set up with home health and a follow up with our pediatrician so, despite being in our home setting, Sutton has been monitored pretty closely. At his home health visit today he weighed in at 8 lbs 14 oz - he is continuing to gain about an ounce a day.

Next week we will return to SLCH for at least an overnight visit for a follow up bronchoscopy. The ENT team wants to be sure that with consistent weight gain the area of exposed cartilage in his throat is healing. At his second look (while still in the NICU) the cartilage was not healing, but the docs attributed that to his on again, off again NPO status. This visit will be strange for many reasons: first, it is planned and second, he will not be in the NICU with the nurses and staff we spent his first four and a half weeks getting to know. It will be a whole new crew. Hopefully, our overnight visit won't get unexpectedly hijacked into a longer stay and we will only have 24 hours to make new friends.

Being at home with two kids has been....dynamic. In many ways I think the transition to two has been easier given the situation because when I feel overwhelmed I just remember that I am at home. With both of my kids. And everyone is healthy. This usually leaves me feeling very grateful and puts me back in the right perspective to enjoy my boys. But sometimes its just overwhelming. Let me rephrase; sometimes Cohen is overwhelming. He wants to be SO helpful (and I love his enthusiasm), but he's like a bull in a china shop. Plus, he flat out refuses to nap despite heavy eyes and long, drawn out yawns. Sutton, fortunately, doesn't seem bothered by his brothers rough love or loud screeches and only pipes up when he's hungry or gassy. Did I mention he has been sleeping in five hour blocks the past few nights? Talk about a flexible kid! I suppose all of this is normal in this transition, but it will certainly take some getting used to.

Regardless, we are all HOME. Thank you God!