G-tube: Check!

We're home and settled back in with James minus the NG tube and we're already happy with our decision, mainly because he seems to be doing so well without the discomfort from the tube down his nose and throat.

Snuggled up for the early and snowy drive

Rewind to yesterday morning. We arrived to the hospital early and with a very happy and smiley baby. Even just a week ago he smiled mostly just for mom and dad, and now he'll smile at anyone he can get to look at him. We were brought to a small pre-op room where James donned a tiger gown that we wanted to keep and had lots of visitors from different nurses, the anesthesiologist, residents, and the surgeon.

He didn't stop smiling until the phlebotomist came to draw his blood, then he got pissed. Shortly after that, when the anesthesiologist came in and carried him away for surgery, is when the tears came. I held it together pretty well all morning but something about someone else carrying your baby away made me feel helpless. Then we had to walk to the waiting room and pushing an empty stroller only made me cry more. Ugh. I was doing so well. I just wish it would have been me instead of him. Adam: "Now you know how I felt for both of your surgeries." I don't know how he did it.

We were told the surgery would take about an hour and believe me, I counted down the minutes. An hour went by, then an hour and a half and then I couldn't sit still. This is taking too long, something's wrong, this shouldn't be taking so long. Nearly two hours went by before we were told we could go back to see him. And then there he was, bundled up in a crib in recovery with his pacifier in his mouth like nothing ever happened. He was definitely more sleepy than normal but snuggled right up into mom's arms, and then more tears from me. I was relieved and then felt silly for ever thinking anything could go wrong because here he was, perfect as ever.

We were transferred up to our room and settled in with our sleepy baby who did wake up for a bit to let us know he was just fine.

Photo credit: Papa Hoge

My view from my nap on the couch

I think he was still so drugged up and numb because he seemed perfectly happy - and then the evening rolled in and things got quite a bit worse. His caudal block, similar to an epidural, wore off around dinner time and he instantly went from drowsy to angry, HUNGRY, uncomfortable and inconsolable. This was also about the time that Adam and Papa Hoge left for the evening. Basically I could not put James down in his crib without him screaming and he had to be constantly bounced up and down - and not just a small bounce. A "I'm getting a work out and will be sore tomorrow" bounce (I realize this may be normal for some babies but not for James, give him his pacifier or some food and he's happy as can be).

The nurses did a shift change and luckily our night nurse was a bit more proactive. She paged the resident to see if James could have some sweeties, or sugar water, on his pacifier because the recovery nurse had given him some and he absolutely loved it. Our daytime nurse just said "no, he's not supposed to have anything by mouth" without suggesting we ask the resident and surgeon. Sure enough, they said it was fine. Instant relief from James! Thank goodness, my legs and my arms were getting quite tired.

Sad baby who calmed down after hearing Dad's voice on the phone

This nurse also informed me he had morphine ordered. What?! I was again a little upset because I had been told all he could have was Tylenol. "GIVE HIM THE MORPHINE!" At this point it was nearing his bedtime and I was considering calling Adam and begging for help and for him to return because there was no way I was going to last the night (again, props to you mommas with occasionally inconsolable babies. I barely lasted a few hours). Morphine was put into his IV and instantly he was sound asleep. Thank god! We managed to sleep for a little over an hour that first stretch and then I was up about every hour to adjust or put the pacifier in or rock a little. All in all not a nightmare of a night but it certainly didn't start out well.

This morning we had a whole new baby who was back to his smiley self. He's getting Tylenol every 6 hours and worked his way back up to his normal quantity feeds with no issues. We begged our way out out of the hospital and were home by about 5 pm today. Felt strange to leave the hospital after such a short stay and seems like we're home with a new baby because of the new care required for his circumcision and g-tube site.

MUCH happier

All in all we're relieved it's over with and that everything went well. Going through something like this makes you realize how much you love this little human, someone who just came into our world four months ago today, something that still and will always amaze me.

Cardiology - November 12

Thumbs up from the cardiologist - I went into this appointment with a very bad feeling and afraid that we would get some sort of bad news but they were pleased with James and feel he's doing well considering and don't need to see him back for four months unless anything new pops up or his condition worsens. Big sigh of relief!

He had an echo done "to take pictures of his heart" as they described it to us. The tech was able to point out the small hole in his heart which was barely noticeable. Sweet boy got to snuggle next to momma during this procedure.

Also was the EEG to measure his heart's activity which James loved because he got to flirt with the nice lady who administered it. Everything was normal so mom and dad were happy.

After the procedures we talked with the cardiologists who were very kind and reassuring about everything from his condition to future procedures and even his g-tube placement for the next day. We were told that the surgery likely wouldn't be until James is eighteen or even close to twenty-four months old mainly because he was a preemie and the older he is the less chance he'll have for any complications such as infection. Also, heart surgery requires a longer period of being under anesthesia which is risky for any little baby. Made me feel more reassured about waiting as we kind of felt like "let's get this over with."

We were also given more detail about the small hole in his heart, or VSD, as we hadn't heard too much about it before. Where it's located they don't anticipate it ever closing on it's own or becoming larger but instead it may affect a valve, depending on the way his heart grows. Something they'll monitor but they felt, at this time, he would be fine.

Something else we had been wondering was if James would be able to play like any other kid and participate in sports when he gets older and we were told that he would more than likely be just fine and normal after having the vascular ring repaired. Again, another sigh of relief, especially for dad who hopes to have a little basketball player. The biggest factor in this will be whether he has any developmental delays because of the Di George syndrome but luckily his mom is a great therapist!

G-tube time

After several swallow studies not going well, it was recommended that James have a more 'permanent' feeding tube surgically placed in his tummy as it is a more cleanly, comfortable and less stressful solution to his current nasogastric (NG) feeding tube in his nose. This new tube is a gastrostomy tube, or G-tube for short, and is essentially a port placed on his abdomen that leads directly into his stomach. We will still hook him up to the same infusion pump we have now for feedings and hopefully continue with the 2-3 small bottles of thickened formula per day. We were all for this procedure and new tube as he was constantly pulling the NG tube out of his nose requiring us to basically hold him down screaming to put it back in. Certainly not pleasant for him but I think more stressful on us. Maggie even chewed the cap off of the end of the tube once requiring me to put a new one in -- she was almost kicked to the curb.

The surgery is planned for tomorrow, Thursday November 13. We have been eager to have this done but as it's coming closer I'm beginning to grow more anxious and scared. Is this the right decision? Are we going to be causing him more discomfort instead of making things easier? What if he gets an infection? What if we get stuck in the hospital again? I just can't help but to expect the worst after all we've been through. Things have just never seem to go quite right and I sometimes am not the most optimistic person but that's where Adam comes in as he is always positive and able to make me feel better. We seem to balance each other out so I'm lucky to have him support me and James is lucky to have at least one parent who won't be in tears tomorrow.

He's also finally going to be circumcised as that has taken a back seat to everything else that his team has been worried about and dealing with since he was born. I hope he heals fast and that there are no complications. Any advice is welcome! We were told he will stay overnight in the hospital and that they don't expect any complications or issues and he will likely come home Friday. Keep James in your prayers and also a prayer or two for us parents to stay strong and keep positive!



The following pictures are from a procedure James had done to check the anatomy of his stomach and intestines so that they know where to cut his abdomen and place the g-tube. It was quick, easy and painless and they were impressed with James' good behavior :)

October photos

50 days until his first Christmas!

Maggie is getting more protective of James every week.

Loves hanging out with his Grandma

Chilly mini vaca to Lake Geneva

Visiting mom's work on Halloween

Quick photos before momma's first day back to work

Loves watching the bright light from the TV.

Trying to catch a smile on camera - little guy is all smiles lately.

Late Sept - he's grown so much!

October 5 - Family nap time

Sept 27 - Badger family

Pulled all his tubes off - naked baby

Oct 5

Vascular Ring

Before discharge from Lurie we got some more news regarding James' heart. This was one area of his body we thought we had checked off the list as being fine, besides the VSD or ventricular septal defect which was something we may or may not have to deal with down the road.

The team had seen a narrowing of his esophagus during the initial swallow study. I had seen this too as one of the speech therapists pointed it out mid-study and the radiologist kind of brushed if off. I thought he really was brushing it off, but turns out they discussed it once I was out of the room. Their first thought ended up being correct, he had a vascular ring.

Fast forward a week or so after a CT scan of his chest when we were told the news. Our neonatologist and his fellow both came in to tell us and I had learned that whenever you're approached by more than one person the news isn't good. He told us they had found a right aortic arch with a vascular ring that would require surgical intervention likely sooner than later. In a nutshell, his aorta wasn't quite in the right spot and was going up and towards the back of his body and then downward instead of arching downward right away. It was also forming a 'ring' around his trachea (airway) and esophagus and as he grows will tighten -- this is why it will require surgical repair.

My initial response was anger, why were we just finding this out? He had had CT scans of his body before, he had had echos on his heart. There should have been multiple times were they found this and now, after nearly two months in the hospital and so so close to going home we were just being told. I was afraid this was going to hold us up from going home and honestly I was just so over being told bad news. The doctor apologized again and again and we had a good discussion about being kept in the loop more in the future, as I felt we hadn't been. Hard to come from a small hospital with about six babies at a time and being constantly communicated with in person step by step to a huge hospital with 40+ babies where, to quote the doctor, "your baby isn't the most acutely ill baby, we've got our hands full."

Again, our initial thoughts were that this was something that would have to be fixed right away. Our neo doctor I believe said within a couple months but that he was going to consult with the cardiologist to get more information. We then were told at around 18 months we could expect the surgery as this was when James would likely start eating solid foods like raw carrots which become an issue as the narrowing in his esophagus could block whatever he's eating and cause him to choke. Our thought is why wait, let's get this over with but they want him to be as big as possible to make the surgery 'easier' and safer. We were also told that this would not be open heart surgery and that they go in through the side of his chest and that the surgeon considers it a relatively routine procedure and that he's the top surgeon for this specialty. Great, but let's still do it sooner than later.

He also still has the VSD - ventricular septal defect- which is a separate issue altogether but due to the 22q, as is the vascular ring, and we were told would have to be a separate surgery to repair if needed. We see the cardiologist today and I'm sure will be updated on the timeline of things and the likelihood of surgery and repair for this defect.