Posted (Tina) in All Posts on February-12-2008

Today was Ella’s first follow-up appointment with Dr. Kays outside of the hospital.

The appointment went well. Ella looked good and was showing off to Dr. Kays. She flashed him a smile, cooed a bit more than usual and looked good overall.

He sympathized with the feeding issues, but noted that it is pretty common for CDH babies. The recommendation was to continue to tweak it until we come up with something that works for Ella. Her weight gain just by looking at her clinically is decent considering her large dose of diuretics and the scale confirmed it (11 lbs, 5 ounces and 23 inches long), so Dr. Kays is not as concerned about increasing the density of her formula. He stated that we could stay on the 24 calorie Alimentum and try that for the next couple of weeks (not adding any Polycose powder). He is more concerned that she is tolerating the food and steadily gaining weight. We will see what she weighs next time we have an appointment (two weeks from now).

Ella’s g-tube was protruding too far away from her belly and therefore, she grew granulation tissue around the g-tube. Today, Dr. Kays switched it out for a tube that is one size smaller and burned off the extra tissue growth. This is something we have to watch and manage closely. If you allow the granulation tissue to grow and do not burn it off, it can become a problem by causing the g-tube to not function correctly. Fortunately, with the Mic-key g-tube, the process of replacing and burning off the extra tissue does not hurt Ella. She still gave a good cry, but that was just her letting us know that she was not enjoying the party.

We asked about Ella’s stuffy nose and Dr. Kays recommended just “dealing with it”. There are some medicines on the market for infants with cold or flu like symptoms, but recent studies indicate that using these remedies have negative long term impacts for babies which is why some of them are being removed from the market. With that in mind, Dr. Kays tends to be more traditional and old-fashioned. Simply continue to use saline drops and wait for the best!

We had to have blood drawn for labs. Fortunately, the nurse practitioner who knows Ella real well checked out the employees between the pediatric clinic and the lab draw downstairs to assess who would be the best to draw blood from Ella. She liked the ladies working downstairs in the lab, so she sent us downstairs after our appointment. They were terrific. Josh, myself and one nurse assisted in holding down Ella while another nurse drew the blood. So, how many people does it take to successfully draw blood from Ella? Four adults sounds about right.

We were able to pick up our car from the repair shop from our accident 2 weeks ago. It is nice to have our own car back in our possession. One thing that is amazing: there was damage to the radiator floorboard which is a special part that is on shortage and the part has to come directly from Germany. There was only one of them that fit our car in the entire country right now and it was in a mechanics shop in Gainesville. Apparently, two other VWs came into the repair shop after us that also need this precious part for their vehicle, but it is going to take 2 months to get one in from Germany. Wow!

We have an appointment with the pediatrician tomorrow and Ella is supposed to receive her 3rd synagis shot. She will get one more in March too and then will have a break until next winter starting in November. It will be good for us to see Dr. Sarantos since we haven’t seen her since Ella was re-admitted to the hospital. Hopefully, we can make it back home accident free this time!

Ella is still struggling with the volume of food. The past 2 nights she has woken up during the continuous feeds due to discomfort. Even during the day while we feed her 35ccs, she ends up getting discomfort at varying degrees. We are trying to avoid having her connected to the feeding tube 24/7, but it is not looking good at this point.

Please pray that the Lord would provide wisdom and guidance to myself and Josh. Basically, we are in charge of figuring out a plan to make sure that she intakes 550ccs each day and how we get that accomplished is up to us (Dr. Kays doesn’t care how we do it). We just want to make sure that she gets it with as little pain or discomfort as possible. But as all of you can imagine, it is tough enough to be connected to oxygen much less a food machine all day and yet still try and do regular things like give Ella a bath, so we want to strike the best balance possible as we get her through this challenge.

Thanks for all the continued thoughts and prayers. The support from all of you has been incredible.