Questions and Answers

July 20, 2010

So I’ve been getting lots of questions about how Shepherd is doing, and how our family is doing these days. And to help you guys know what’s going on, and also to help me not have to tell the same story so many times, I’m going to put all of the answers in one place.

Where is Shepherd? He is still at Medical Center of Lewisville, which is 15 minutes from our house.
How often do you go see him? Twice a day, once around lunch and every night at 9pm.
When is he coming home? We don’t know.
How much does he have to weigh before he comes home? Weight doesn’t determine when he comes home.
The NICU is a sterile environment, so when a baby leaves the unit, he can’t be readmitted because he’s been exposed to the outside world and it’s germs. So the requirements for “graduating” from the NICU are high, so that once they leave, they should have to come back.
So what are the requirements? Glad you asked, I took some photos today of what the NICU is like to give a better understanding of Shep’s world and what he’s working towards. These were all taken today during his afternoon feeding.

That’s Leslie holding Shepherd, and that machine with the blue screen is a pump. It’s what’s sending milk into Shep’s belly. Right now, he’s getting 19 milliliters of milk every 3 hours, but that’s not all that he should be getting based on how much he weighs. They’ll keep adding to it until it’s 22mls per serving. He’s also started bottle feeding, which is a skill he hasn’t learned yet. That’s ok, because he’s still supposed to be inside mom for another 4 weeks where there are no bottles. He’ll get it when he gets it, and then we’ll work back up to full feeds, but this time via bottle or breast feeding.
This is Shepherd’s biggest obstacle to overcome in getting to come home. He’s a healthy baby, but he’s still small. And if he has any set backs, the first thing they do is cut back on his food to let his body focus on that instead of eating. Also, if he continues to not poop regularly on his own, they can’t keep giving him tons of food to eat. If he eats like a champ and has no set backs, he could come home in as soon as 3 weeks, but realistically it’ll be longer. His due date was going to be Aug 13th, 3 days after my birthday. I’m still pulling to have him home on my birthday, but we really don’t know
This next picture is the other half of his requirements.

This is the monitor next to his bed, and it displays all of the information coming off 4 of the 6 wires attached to his little body. The green part of the top is his heart rate, the middle part in yellow is measuring his breathing, and the blue part at the bottom is from a thing on his foot (the red light in his pictures) that measures how much oxygen is getting circulated in his blood. Shepherd has to keep all three of these things stable if he’s to come home. He also has to keep his temperature stable all on his own (he’s still getting help on this one at this point). When we say he’s had a bad day, it means one or more of these is down.
He’s got a whole checklist of things that either we, or he has to do before he can come home. One of those is the car seat test, where Shep will have to sit in our car seat for an hour without having any problems such as breathing or oxygen saturation. Stuff like that.

Soooooo, when is he coming home? When ever he meets the requirements. I don’t like this answer, and I don’t expect you guys will either, but trust me when I say it bothers us more. It bothers us that he doesn’t always feel like out son but someone we just go to visit. I don’t care that it’s some sort of coping mechanism, and I want to not be so caught up in these details and just be with our little son. But to let go of restraint is to be confronted by the helplessness of wanting to bring him home and knowing that he’s better off in the NICU for now, which produces extreme emotional responses in Leslie and I as it is. My default emotion is anger, and driving on I-35 twice a day is enough to make me feisty, but add in all this and I am becoming quick to get agitated.
edit* I’ve been telling people that we feel like we are treading water emotionally, and the steady stream of good news (about weight gain, or getting to hold him more, and starting to bottle feed) is what buoys us with our heads above water. but when Shep hits some set back, or has a bad day, or we just get disappointed because something changes, it’s like treading water and having someone take their foot and shove you 3 feet under water. that’s when we’ve got to just trust that Psalm 46 is true.

And another fun thing, whenever he does come home, he’s still be at a high risk of getting sick and we won’t be able to have tons of people over or bring him out to meet everyone for quite some time. This a huge bummer for me, because I want more than anything to show everyone our son because he’s the most wonderful little man.

It’s late and if you have any other questions, leave a comment and I’ll add a response to the note tomorrow.


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