The GI Follow Up

Monday was the boys first snow day. We got them all geared up to take some pics in the snow but it was very windy and Cameron did not want to cooperate by sitting in his Bumbo chair in the snow and he was even angrier when I put him actually in the snow. Evan didn't seem to mind as much but when he saw Cameron melting down he joined in so our photo session was cut very short.




















Tuesday was a busy day with an OT session, our GI follow up, and trying to celebrate Drew's birthday. On top of all that one of our computers crashed so I'm just now getting around to posting our latest update about the boys GJ tubes and their feeding and growth.

As of Tuesday the boys were on 24/7 continuous feeding pumps with Cameron getting 30mls/hr and Evan getting 27mls/hr of Neocate mixed to 30 calories. At the GI appointment Cameron had gained almost 2lbs since we were admitted to the hospital and he now weights 16lbs! Evan had gained about 1 1/2lbs since being admitted to the hospital and he now weighs 13lbs 9.5oz.

This is a feeding bag.

So now the plan is to increase the volume of feedings they are getting and slide in some breaks off the pump during the day in hopes of A) giving their bodies a rest from digestion, and most importantly B) making them a little hungry so that I can try feeding them during the day at least one "meal" whether that's a tablespoon of puree foods or one ounce of formula. The breaks off the continuous pump will start off with 2 hours and increase as the volume of food increases while on the pump so that they are always getting the right amount of calories without dissuading them from wanting to eat during the day.

This is the type of feeding pump we use.

Yesterday I increased both boys one milliliter per hour so that Cameron is now getting 31mls/hr on a 24/7 continuous feed, and Evan is getting 28mls/hr on a 24/7 continuous feed (we will give him at least one more bump up to 29 or maybe 30mls/hr by next week if he tolerates the increase) with no breaks for one week. Then next week we will give them a two hour break towards then end of which they should be hungry and I will try to feed them by mouth. In three weeks they should both be at about 33mls/hr to 38mls/hr continuous feed for 18 hours a day with a maximum 4 hour break during the day. I would like to see Evan consuming as much as his brother, but we just have to wait and see what his body can do.

Your next question is "How do you know they are tolerating the increase in feeding?" Great question! You have to look for signs of belly distension and possible vomiting or food coming back up through the sphincter separating the jejunum and the stomach. If that happens it's very uncomfortable and naturally you will have very fussy babies.

We are also adding back the Erythromycin antibiotic for both kids which works as a motility drug to move things through the stomach and intestines faster. This is because both babies, but especially Cameron, are having heaving and gagging fits throughout the day and occasionally at night and whenever we give them meds through the stomach. (By the way, it is very difficult to find a pharmacy that will make this medicine because it is a compound that must be mixed and the parts to it are very expensive. I found a pharmacy near us but it is going to cost $50 for a one month supply for one baby, or $83 for a 90 day supply for one baby. And that's apparently after our insurance picks up a portion!!?!??? We're still working on that with insurance but Yikes!)



We have been venting their stomach through the G tube port several times throughout the day by wrapping a surgical glove around the open tube. Thank god the guys aren't mobile enough to crawl around or that would be an ugly mess with saliva and bile everywhere. Today we will be having more permanent, portable and cleaner Farrell bags delivered by the medical supply company and we can hook the boys up to those all day.



I am concerned about one thing though and that's that my good friend Annie, who I've met through TheBump.com and who's son Jax is going through the same thing, mentioned the loss of fluids and electrolytes because of the stomach being continuously vented/drained to prevent the heaving and gagging. I am going to talk to the home health nurse that is coming to show me how to use the farrell bags and place a call to the GI today to ask about this. Since they're getting all their nutrients through their J tube and really only meds and tiny quantities of food are going to their bellies I don't think that they will be losing much from the saliva and bile that will drain into the farrell bag.

Another point that Annie had been told by her doctors was that her son Jax could not have the GJ tube McKey button placed until he was 20 lbs. That's distressing because both of us are a long way from 20lbs and this button means that there is no more huge three pronged port hanging out of their bellies so that they can't wear most clothes other than snap pajamas. I did ask our doctors and they said that they didn't have that kind of restriction and are only concerned that the stoma site (the place where the tube enters the stomach) is fully healed. They feel that both boys will be able to get the McKey buttons in just a couple of months, though this requires another hospital stay, more anesthesia and contrast IV dye reactions. I'm sure that things will be better this time because now we know what to expect.

Wow, I hadn't really thought about it, but this means we have to go back to U of MD hospital again and soon! Ugh. I hate this. I hate all the tubes, the hospital systems, all of it. But they are growing and they would not have been doing as well without these tubes. And they are almost starting to sleep through the night. The farrell bags venting their bellies should help with that. I wish the farrell bags could also replace the pacifiers in their mouths too.... I guess that's asking too much, huh?

We also have our first evaluation with the Mt. Washington Hospital feeding clinic. It turns out that of course(!!) we fall into a limbo category where my boys are too little to go through the full feeding clinic which is a Monday -Friday 8am to 4pm program with one nap a day. We are still napping at least three times a day. But they do have a program where they will work with you for 45 minutes a week with either an Occupational Therapist or a Speech Therapist until they are ready to move on to the next program. This will be in addition to our free Infants & Toddlers Early Intervention PT and OT sessions we are getting through the state and we will probably have to pay some out of pocket costs for whatever our insurance doesn't cover for this Mt. Washington program.



That's a long update!

Ahh.... Home Sweet Home

It feels so good to be home! I missed my doggies. I missed my mom. The quiet of my home. The comfort of knowing everything in our house is germ free. There are no strangers wandering around sick. No nurses to take vitals every four hours or cleaning staff changing trash bags at 2am. No doctors that like to come in, turn on all the lights, talk loudly, poke babies and run. And there is internet that is available any time I want. Oh! And my poor DVR is bursting at the seams with all the shows I need to catch up on. And I can't even express how excited I am that I will be taking a shower in my own bathroom and sleeping in my own real bed, instead of a cold water-pick like shower and a narrow plastic covered bench or fold out chair.

I am happy to be home, but I don't know if I can say the boys felt the same way. Three weeks in the hospital is a long enough time for their little goldfish-like memories to have forgotten home. It's all new territory all over again. And their stranger anxiety was in high gear even though they normally love and gravitate to their Granny Cathy. Nothing would console them for hours but being held by Mom and Dad. They are finally sleeping thank god, laying down flat in their own cribs for the very first time. It took almost two hours to get them to finally sleep but they wake up on spastic furious angry screaming fits until we pop a paci in their mouths.

I'm trying to wrap my head around their medicine and sleep schedules. The GI wants us to try to feed them one ounce of Good Start a day to keep them remembering how to take a bottle. And she wants us to try giving them a tablespoon of watered down puree foods, though staying away from anything or quantities that might give them diarrhea like fruits. She is hoping that we will transition from 24/7 continuous pump feeds to feeding on the pump over night and eating by mouth either by bottle or purees three meals a day. But having them on 24/7 continuous pump is surreal because now I don't now what I'm supposed to do with all this extra time that I'm not trying to coerce two babies into eating with sever reflux. I guess we'll have time to make a few more laps around the playroom toys.

Also, because of our hospital being such the proactive and well coordinated bunch, they have not given the boys their RSV shot for the month of February. This worked out in our favor because our pediatrician spoke with the representatives at Synagis about the reactions they had to the last three shots and the company officially said not to give them the shots any more because it is likely their allergic reactions will get progressively worse each time they're given the shot. This is fine with me, but now we will need to be even more anal about germs and going out in public.

Here are some pics of the boys during our stay along with a great video of Daddy making them laugh so hard they peed themselves.

Cameron & Evan with their NG tubes (these are the tubes that go to their stomach which did not work for them at all).














How do you entertain two babies attached to feeding tubes and IV's??












Evan's OT says he has a hyper-extendable thumb joint which if not corrected could do damage to the tendon. Basically he's super double jointed in one thumb, moderately double jointed in the other. This did not stop him from breaking in his new thumb brace with some good old fashioned slobbering.







Cameron is already living up to his fathers expectations of being a professional video gamer!







Cameron chillin' in the playroom at the hospital.






The boys are showing the doctors how it really should be done.






Evan post GJ tube surgery.







Dueling GJ tubes.






First attempt at escape:



Interactive babies are very grabby at EVERYTHING!


This is how we celebrate going home!



My husband and I would like to thank everyone of you for your support and encouragement, even though we may have decided to do things differently. We hemmed and hawed, we argued and debated, we cried and agonized over what would be best for the boys. We stretched and grew the foundation of our marriage and our love for each other and our boys. Every one has been so wonderful to us and it just blows our minds every day at how amazing it is that we have all of you, lots and lots of people many of whom we have never met, cheering us on and loving our boys from afar. We can't even begin to properly express our gratitude for all of your love and support through this difficult and very scary time.