We had our first check-up at Duke Thursday at the Clinic, and it went very well. It was so exciting to bring him into Duke and do normal things with him, like try to figure out where to change his diaper in public (no, I am NOT using one of those disgusting changing tables in the bathroom). They seemed pleased with how well Carter's doing and the progress he's made in just a week at home. We got to see some of our favorite Doctors and Therapists. After the visit, we swung by the ICN to say hello to some of Carter's Nurses (and show off his jeans to Erica) and we were able to visit with Dr. Goldberg, who is THE reason we chose Duke. Of course, he smiled and flirted with EVERYONE! We're so fortunate to have a baby with such a happy disposition. Even after hours of check-ups, therapy sessions, poking, prodding, etc. he was still smiling and laughing.
After we left Duke, we took a quick ride to Parker's House to pick up some things we left behind and turn in our keys. We ended up visiting with Michael and Carolyn, Davis's parents, and some of Carolyn's family members, who are the current residents of PH. It's a good thing we went because Carolyn was about to volunteer to become a "baby holder" at Duke just so she could get her hands on a baby :) Michael snapped some pictures while we were there, which are at the bottom of this post. We are so touched that he would take time away from what's so important to send us these. Thanks for making us realize that we need a better camera!
Dr. was ok with us leaving the tube out for now, but only if we are not getting anxious about feeding Carter. He said if we start to see ourselves pushing volume and forcing him to take more than he wants to, then we need to put the tube back in. If we push him too hard, it could completely backfire on us and cause Carter to reject oral feeds altogether. He didn't really gain any weight (just a few grams) so they made some changes to his feeds by increasing volume and kcals (additive to add calories to the milk). For now, we still have to stick to the Duke plan of feeding x amount every 3 hours--which means forcing him to eat throughout the night, when he should be sleeping.
One of our biggest feeding hurdles right now is that Carter will only "sleep eat." This means that he will only take the bottle when he's sleeping or very tired and distracted (like in the dancing video). You've never seen a temper tantrum like the one you receive when you take a wide-awake Carter from playing and show him the bottle. He does well sleep eating, usually taking his entire prescribed amount, but if he wakes up, it's over. The slightest thing, from the phone ringing to the doorbell, will cause him to stop eating and refuse to finish. Brad or I spend about 30-45 minutes prior to a feed tiring Carter and trying to get him to sleep. We then pull up all of his meds and give them to him by squirting a teeny bit into his cheek 0.1mL at a time (it's like watching paint dry); otherwise he gags and wakes up. He will take the bottle in anywhere from 15 mins to an hour and then we hold him up for 30 more minutes to help his severe reflux and keep him from choking when he pukes. Take another 10 minutes to wash everything and it's almost time to start on the next feed! (remember, he has to eat a certain amount every 3 hours)
Without the NG tube, Brad and I found ourselves running out of steam quickly in the last 48 hours. We ended up dropping the NG tube back in Friday afternoon because we realized that we were doing exactly what Dr. warned against. We were pushing him too hard and were really upset when he didn't take every drop of every feed. What we should be more concerned with right now is the quality of a feeding session, not the quantity. The specified quantity is necessary, but with the NG tube available, Carter is free to take as much as he desires by mouth and we give the remainder via the tube. We need to get Carter to a place where he will willingly take the bottle when he's awake and aware.
We also are going to have therapists (probably Occupational and Physical) coming to do in-home therapy. That's really going to throw our schedule for a loop! The ones with Developmental Services/EI should be coming out in the next 2 weeks to do their evaluation and set up how often each week they will be visiting. We're hoping to get a private OT in next week though, because we really can't afford to have a lapse of a few weeks in therapy. (We're also looking forward to the Spring, when Carter is allowed to do outpatient therapy with Miss Leah!)
I've been doing the midnight and 3am feeds, while Brad gets some sleep and he takes over at 6am, while I sleep. But, I had to go back to work tonight, after a week off, and I don't know how we're going to find time to fit it all in! Brad goes back to work on Monday and we're going to try to juggle Carter's schedule between the two of us, with me working permanent nights. We barely have time to even shower--to our coworkers: if you smell baby puke, yes, it's us; please kindly remind us that it's time to shower! We spoke with the pediatrician today about the possibility of hiring a night nurse/CNA/nanny to come in a few hours a day to help out and are waiting to hear what she finds. It has to be someone with medical knowledge because he/she will need to draw up meds, use the feeding pump, etc.
I know all parents of infants loose sleep, but most of them have more than just one week after bringing baby home from the hospital to settle in before returning to work. Brad and I don't have maternity/paternity leave, so we're trying to figure it all out in a few days, while working and being severely sleep deprived (I'm talking 2-3 total hours of sleep in over 48 hours). But, would I trade it? Nope, absolutely not. I'd take never eating or sleeping again just to have Carter home.
We had to go to the pediatrician's office today for a weight check and his RSV shot. We saw a different Dr. from our primary ped., but she's also very knowledgeable about CDH/ECMO kids. She said Carter was the best looking (health wise) CDH child she'd ever seen! She was truly amazed at how well he is doing, which gave us the chance to brag about Duke and how FANTASTIC they are. I think we should start charging a referral fee to Duke--haha :)
p.s. there was a lady in the ped's office staring at Carter's NG tube like he's some freak. if you happen to see a child who doesn't fit into your sense of "normal" please don't stare.
It's going to be very important that we keep Carter on a strict schedule so we can fit in everything we have to do, and so he can organize his sensory system. We have a spreadsheet on the fridge to keep track of who did what, when and what's due each hour. I'm going to have to alter it to include his therapy sessions and weekly visits for weigh-ins at the peds office. We just can't afford to throw him off of his schedule and get behind or for a feeding session to be interrupted, so we're going to continue to ask that people not visit.
If any of you, especially families of children with special needs, have any suggestions about how to balance both parents working + taking care of Carter's needs, please send them our way.
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