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Sunday, March 08, 2009

83 days old...

Quick update...

Feedings are progressing much slower than we hoped. Mid-week he started having some unexplained desats after feedings and a temporarily low hemoglobin and hematocrit count. He's back on the nasal cannula, at room air with a low flow... yep, more tubes. Connor's doctors are slowing things down, only allowing NG tube feeds for now, while they rule out some causes - like infection, respiratory issues, aspiration, strictures, etc. Doesn't look like an infection - so far his bloodwork has come back fine. He's a super-duper pooper with nominal residuals in his stomach (they pull back on the NG tube before each feed to see if he's got fluids still sitting in his stomach), so it doesn't seem to be a stricture. Everything's kinda pointing towards reflux, but they're not making a final diagnosis until they're able to rule out more serious situations.

I've had a couple of stressful meetings with a speech therapist to evaluate his bottle feeding abilities. Both times, she was there for his 4pm feedings - which is typically a sleepy time for him anyway. At each assessment (his 2nd & 6th bottles ever), Connor wasn't up to performing for her. In my opinion, he didn't seem to act much different than a newborn learning to take a bottle... but based on her "textbook" knowledge, everything he did was in some way a stress sign - whether it was raising his eyebrows, moving his hands, etc. She stopped and started so much, I think he just got bugged with it all (and he was already tired). None of the bottles I had given him to that point had gone so poorly. Now they're talking about barium swallow video x-rays and other tests to rule out problems. Necessary? I'm not sure... I kinda think that any baby she would evaluate would exhibit some sort of problem... according to the "textbook". [sigh.]

I also had his physical therapist stop me in the hall this week to chastize me about his lack of tummy time... because "he really hates his tummy". 1 - the kid had gut surgery for goodness sakes, with incisions breaking down into wounds, so it's not like he's been able to lay on his tummy every day for the past 80 days. 2 - you're obviously not around enough, because he loves sleeping on his tummy, and it's a position the nurses often place him in. 3 - he was likely annoyed with you and all of the stretching exercises you just made him do. Once again, another ridicurous jump to conclusion.

For any of these therapists, they're making judgments and assessments based on a single interaction with him over the course of 15 minutes... maybe twice per week. (And not even every week.) While I think they will be useful in Connor's development, I think they are trying to justify their positions there at the hospital as well. Not every baby is going to respond or react the way it's described in the textbook... and the therapists just don't seem to get that.

Can you tell I'm getting kinda bugged with everything?? :S

Meanwhile, Brian and I are spending more time at the hospital than ever these days. Connor is awake for longer periods of time, and really needs the stimulation that our interaction with him brings. It's great fun to see him awake and happy, but the NICU environment is very stressful and anxiety-laden. There's quite a few new babies in there with high-strung parents who seem to zap all the energy of the staff, as well as any quiet left in the room. The more tired we get, the harder it is to tune it all out.

How much longer for Connor? We honestly don't know... and no one is willing to put a homecoming date out there. My original due date is March 18th, and it looks like we'll definitely be going past that. Until Connor gets a handle on his feeds, and is taking in the amount he should for his size (we're only at 10 mLs - 1/3 of an ounce - every 4 hours), we're stuck in a holding pattern. He seems to have the weight gain requirement down pat - he's averaging 2 ounces a day... he was up to 6 lbs, 15 oz on Saturday night.

After weeks like this one, we have to remind ourselves just how far he has come... it truly is a miracle.


Janet said...

I don't know how you do it? All of your posts up to now have been so postitive that this one threw me for a loop. You guys are doing great!! Keep plugging along. Doctors for sure don't know everthing. That's was moms are for ;)

Anonymous said...

Aimee: Read your blog today. You tug at my heart. You guys have been so strong, so valiant and diligent, such exceptional parents plus have tried to do everything right. No wonder you are bugged at the specialist. Connor has been such a fighter as well. Hang in there. You have come such a long way and have exceeded everyone's expectations. Certainly you have "earned" the right to be tired, upset, annoyed, or whatever. Know too that you do know Connor better than anyone and have spent so much time with him. Trust your own instincts.
Just my way of saying hang in there, we love you. AJ

Nate and Kelly said...

Aimee, I can only imagine what you and Brian are going through with your little one. Don't forget you're amazing and remember you can DO this-- you have the strength for great things and Connor is so lucky to have such dedicated parents. I heart you!!

Anonymous said...

Aimee and Brian,
I love your page it is great. After reading your last blog, I had most of the same feelings. I was told that when Natalie was smiling that she was stressed out. That broke my heart!! Why would anyone tell a mom that I don't know.It sounds like Conner is doing well and we hope for his homecoming soon. Our stay was not as long, but hang in there. He passed up Natalie for weight we are still far from the 6 pound mark. We are still under "eyes" even after we are home for her weight. His pics are sooo cute!! I will be sure to visit the site and seeing how you are all doing.
Jen, Mike Natalie Nelson

Megan B ♥ said...

Oh, Aimee, you just described perfectly our entire experience and frustration with occupational and physical therapy in the hospital. It was SO SO SO SO FRUSTRATING!! I can't really say anything else except that everything you described I have felt and stewed about. You just want to shake your head and say "for REAL?" I HONESTLY felt like our OT(s) were finding things wrong with him to justify their jobs. I could go on for hours in this post, but I sense I don't need to. It's super similar to what you just described.

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