Gerber Baby

Nurse Lindzie thinks Carter is so cute that he should be the Gerber Baby. I told her that he'd be a terrible baby for Gerber since he refuses to eat! They'd go bankrupt if it was up to Carter to advertise food for them :)

Carter's had a rough few days. Yesterday he spent a large part of the day crying and screaming. He had not slept in over 24 hours, except for a few 10-15 minute naps. He seemed very uncomfortable, but we couldn't put our finger on what was wrong. He got numerous baths, which usually put him to sleep. Even one of our favorite Doctors tried to soothe him, which lasted all of 30 seconds before Carter screamed in his face. This morning, Nurse Susannah saw the light and gave him a dose of Ativan and he's been peacefully sleeping ever since. After talking to the Doctor today, we seem to think it's a combo of withdrawals (it's only been a week since his methadone was stopped), reflux and an upset tummy (I will keep the details to myself). I wish he could talk so he could tell us what's wrong. He's scheduled for a GI test in the morning so send lots of prayers that they don't find anything major.

We want to thank everyone for your suggestions and effort to get Carter feeding. Please keep the ideas coming b/c there's an answer to his puzzle out there somewhere. We had discussed pacifier feeds with his therapists a few weeks ago, but decided it was not a good idea because the pacifier is the only positive thing Carter has to associate with oral skills. Everything else that's been done to him is negative. The one way he can soothe himself is with his paci. So, we don't want to ruin that by adding a negative stimulus (food) to the pacifier.

We've tried dipping his paci in milk--he hates it. We've tried squirting a drop of milk into the corner of his mouth while he sucks on the paci--he hates it. We've tried milk, pedialyte, water--he hates it. We've tried bottle nipples shaped like a pacifier--he knows the difference. It seems like he doesn't like liquid in his mouth for some reason (aspiration, breathing difficulty, problems coordinating, pain when swallowing, a taste association between the milk and vomiting...who knows?). At this point, we're counting the months until he can have solids and then we may just send the bottles on a Life Flight helicoptor ride to the coast to dump them into the ocean.

I will post cute pics and an update tomorrow.

F = Frustrated

I hate to even mention anything negative because we are so grateful that Carter is alive and thriving. We know that it could be so much worse. But, we've all had a frustrating few days and I think Carter needs some extra prayers and finger crossing.

The feeds have hit a wall and I imagine if he could, Carter would throw the bottle against a wall! We're back to trying finger feeds, which he seems to like better than the bottle. When we introduce a bottle, Carter falls asleep either immediately or just after taking a few sucks. This, apparently, is his way of "shutting down" and telling us that he hates it. We thought it was kinda cute until his Speech Therapist told us that it's a kind of coping mechanism for something that is very unpleasant. Not so cute now. On a positive note, he loves his pacifier. We just have to figure out to transition from finger feeds and paci sucking to bottle feeds without creating more of an aversion. *update* Carter drank 8cc's from the bottle tonight for Nurse Lindzie!

He's also been having high blood pressure, which is a new issue as of the last week or so. He has had repeated kidney ultrasounds, which don't show any problems. This afternoon, he had an ultrasound of his aorta (in utero they thought he had a coarctation), which showed a few small clots. These clots are likely the cause of the high blood pressure and are likely a result of ECMO. Dr. is not concerned about the clots, thinking that his body will absorb them. So for now he's on blood pressure medication to prevent his heart from overworking until the clots are resolved.

They continue to wean his methadone and as he becomes less sedated, his reflux becomes more apparent. So, now he's also on reflux medication. The pH levels of his aspirate aren't that low (low indicating acid) but he exhibits many reflux symptoms: arching back, vomiting, wet burps, wet hiccups, and not sleeping (this kid NEVER sleeps). Luckily, he had a reflux fit during rounds and they promptly ordered the meds later that morning.

He continues to grow, weighing in at a whopping 10 lbs, 12 ounces and just over 24 inches long. Even through all of the above, he smiles, laughs, coos, growls, and plays. The new development yesterday was ROLLING OVER! He was lying in his crib on his right side and rolled over to the left side to flirt with Nurse Elizabeth and look at her bright red (NC State) scrubs. He's also started scooting around in his crib and has been found lying sideways or against the rails with his arms hanging out. We think he's trying to escape!

So, please say an extra prayer for Carter.

Merry Christmas!

Carter's had a big week. When we arrived this morning, Nurse Shanda had him dressed in a Santa outfit (which she saved from a diaper blowout just moments before we arrived!) and he was quite handsome. He's so much bigger than the other babies in the ICN, they all probably thought he was really Santa!

Nurse Brigit was able to get him to take 15 cc's from a bottle and let us snap some pictures of him without anything on his face or tubes in his nose, which was the first time we'd EVER seen him bare-faced. He was royally spoiled with presents from people in the community who donate gifts to the babies in the ICN and by his nurses. I'll have to post a pic later of him in his Duke ensemble from Nurse Rachel. Baby Christopher (Right-Sided CDH) gave him an outfit that says "Babe Magnet" which is very appropriate.

He's still having withdrawals as they continue to wean his Methadone, but they are improving. We're working very hard to get him to feed from a bottle. One of his biggest problems seems to be that he's just plain NOSY! If there's anything at all going on around him, he's more interested in watching that than taking the bottle. Either that or he takes 2 sucks and then falls fast asleep! Just to put it in perspective: Carter is fed 103 cc's every 3 hours via NG tube and is only up to about 10 cc's per day by bottle. He needs to be taking the full 103/3hours by bottle to get home!

Give Santa Directions To Duke

Carter has had a rough few days. We think after his misbehavin' ways this week, he's bought himself a ticket to Christmas at Duke, so I hope someone tells Santa where to find him!

Wednesday was just one big meltdown--the entire day. The only time he would sleep was when he wore himself out from crying and holding his breath, and even sleeping he wasn't comfortable. he was so angry he yanked my hair and pulled my gown off. Nurse Shanda and I felt so helpless because he was so pitiful, but the withdrawals are only going to get better with time. He's on medication to take the edge off the withdrawal effects, but they are given in single doses and his little body has had a constant morphine drip basically since birth. So, it's just going to take time for his body to learn to function without it. (Shanda--he laughed at Brad tonight and hasn't had a snit fit yet, just like we talked about!!)

Sometime between late Wed. night and early Thurs. morning he began to desat and was showing some labored breathing, so they placed a nasal cannula with 25-30% O2 (but no flow) to help him. They did a chest x-ray, which showed some fluid on his lungs. His white counts are normal, so they don't think it's pneumonia. He's not been taking oral feeds, so it's not likely to be aspiration from that. He's back on a diuretic to help him pee off the extra fluids, which we hope does the trick. We don't really know the cause of the fluid, but one theory is that he got so tired from Wed's meltdown that he didn't have the energy for his lungs to oxygenate properly. It could also be from reflux.

This of course happened when I had to go back to work for the first time Thursday night. I hate not being there to get the details on what's going on, but Brad's doing a great job keeping me informed and sending me cell phone pictures :) For the entire three hour drive home today, I begged God to heal him and to give the doctors and nurses the wisdom to make him better. I am comforted that he's in great hands though, which makes it just a teeny bit easier to be away. I'll probably get a speeding ticket on the way back this weekend.

Obviously, feeding therapy has been put on the back burner for now. Once he gets through the serious withdrawals, they can really get back to work with him. Ahh...the CDH roller coaster.

Nurse Lindzie bought Carter a Christmas tree for his crib and it's so cute! I'll work on getting a picture of Carter and his tree for the blog. And thanks to Nurse Susanna for washing his crusty hair and neck!

Baby Rehab Stinks!

As of Monday, Carter is off of the Morphine drip. This is what he thinks about it:

He's still having his meltdowns due to the withdrawals, but we're able to calm him a little quicker than previously and he's not having as many of them. Sometimes, we can even distract him with the mobile. He's obsessed with his mobile, so Brad decided to see what's so great about it!

I think he's saying to me, "Give me back my Morphine or get outta my crib!" :)

And this is just a picture of his wild Rock Star hair and chubby cheeks.


So now we begin the task of learning to eat from a bottle. Please pray all goes well. This is really what is keeping us from going home now.

Happy 2 Month-Day

We had a very eventful "monthday" for Carter. I ended up catching a ride on an ambulance to the ER at Duke last night due to a terrible bout of food poisoning. Brad said when the EMTs arrived, I was gray and apparently gray is not my color! We spent the entire night in the ER and after I fell asleep around 4am, Brad went up to visit Carter--what a surprise to the nurse to see him at that hour. He said Carter was laughing and dancing, so apparently he's become a night owl (thanks to nurse Lindzie playing with him all night), which is going to be great since I work night shifts and need to sleep during the day.

Carter's doing well. He's down to a very low level on the morphine, which should be completely off tomorrow and then he'll have his PICC line removed. He's just recently started showing some withdrawal signs, mostly as snit-fits (as nurse Shanda calls them) during which he goes from smiling baby to pissed off baby in a matter of seconds. He cries, turns red, lips turn blue, breaks out in a cold sweat, throws his arms back and holds his breath. He's still pretty hoarse, so his cries are pitiful. He looks like he's screaming his head off, but all you hear is a little "heh" noise. Typical baby temper-tantrum mulitiplied by a hundred because of the withdrawals. It takes us about 30 minutes to get him to calm down and then he sleeps for a few hours. We're so thankful that he wasn't experiencing this type of withdrawal all along. He's being given meds to take the edge off the withdrawals, but it's just something that he's going to have to outgrow. For right now, we're trying to limit visitors and stimulation so he can stay calm.

He's "eating" 92 mL (just over 3 ounces) every 3 hours through his NG tube. Speech, OT and PT haven't been able to do much therapy this week because of the snit-fits, but we're hoping we can get the ball rolling next week on oral feeds. He's also a champ at filling up that diaper!

Elizabeth, from Breath of Hope, has a website on which she features CDH kids. Carter is currently the featured baby and you can check him out at: http://facesofcdhawareness.blogspot.com/

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