Posted (Tina) in All Posts on May-13-2008

Today was a long day.

We left the house around 12:15 to head over to radiology for a chest xray. They had the strangest device that they use to sit up infants for xrays, with their hands stretched above them. As soon as I looked at it, I could tell it would not work for Ella. I explained that was not a good idea for the Bun. She told me that she would have to go ask permission to not use it. When she came back, she conceded to Ella laying on her back. I’m glad I could be nice about it and not have to argue and tell her that we would refuse to use the device.

Once we left there, we arrived at Dr. Kays office on time. I’m not sure if something came up in his schedule and he was catching up or what happened. In a nutshell, we waited 1 hour for a room and another hour to see him. We did not get home until 4pm (our appointment was at 1:15pm).

It was a good last visit with Dr. Kays. We were able to get all of our questions answered. Ella weighed in at 13 lbs, 11 ounces. Three weeks ago, she weighed in at 12 lbs, 13 ounces. So, not quite a pound on the weight gain but definitely the right direction. I was happy with the progress.

Dr. Kays increased her fluid intake to 625ccs and we are adding a touch more corn oil to her nightly feed. This should help her to gain weight in the coming weeks. We found out that he wants her to have about 100ccs per kilo per day to gain weight until she is around 22 lbs. Then, the rate will adjust slightly downward (not as much per kilo). We wanted a reference point from him, since this is a specific goal for CDH babies. Also, we have adjusted the corn oil to accommodate the increase in her food (.5ml for every ounce; now we are using 4.5ccs each night).

He pulled up the chest xray that she had just taken. Dr. Kays hasn’t taken care of her daily these days, so you could tell he did not have a good reference point for her. But when Josh and I both looked at it, it was the best one that we have ever seen. Her left lung was not as big as the right but was definitely more expanded. They both were larger and more clear than we have ever seen for Ella. When Dr. Kays listened to her via the stethoscope, he commented that she has great airflow. That made us happy too!

Dr. Kays was realistic when he explained that there is a good chance that Ella might have to have surgery in the next few years. Between her low muscle holding the diaphragm patch, her nissen surgery and overall growth, it is likely that things may need to be adjusted and re-repaired as she grows. This was not exactly what we wanted to hear, but I guess we just need to be thankful that we have the Bun. God will prepare us and help us deal with those chapters of our journey too!

We agreed to come back within a year, as long as Ella has been weaned off oxygen. We sure hope that is the case. Only time will tell. If Dr. Kays had to predict, he thought Ella might be on oxygen for 9-12 more months. I can’t even imagine the freedom we will feel without being tethered to oxygen. That will be a glorious day and another huge milestone for Ella.

It is going to be so strange to not be near Dr. Kays and I just hope that Ella is not in need of any surgery anytime soon. I would so much prefer to plan for surgery someday in the future.

Once we got home, it was nearly time for another PT session. We have been having them 5x per week. I think that Ella is getting stronger each day. We still have a LONG road ahead of us in this arena, but it is good to see her making progress.

I can’t believe that Ella is 42 weeks old…only 10 more weeks and she will be 1 year old! Wow…

One thing is for sure…she was cute today in her Daisy Duke outfit.

Joel Snyder on May 13th, 2008 at 9:26 pm #

Ella, Sorry about the long day but it seems you are beginning to be able to cope with whatever happens. You look good in your outfit and your picture with Dr.Kays. I am sure that you will keep up the steady progress and I am praying that you will get rid of the oxygen when ready. I am looking forward to seeing you soon. Check on you later. Love,Grandpa!!!!!!!!!!!!

Nazanin Roboubi on May 13th, 2008 at 10:09 pm #

Thank you Thank you Thank you for your blog! I’m a mother of a 25 week old preemie who developed chylothorax in Palm Harbor, Fl. The physicians here were killing my son. One night doing my endless search on the internet I came across your blog and Dr. Kays. I decided to write him and we have decided to transfer him to Gainsville tomorrow. I feel like we’re in good hands. Thank you again. I would love to speak with you even though my son did not have CDH he does have chylothorax.

kristin on May 13th, 2008 at 11:27 pm #

Oh Sweet Bun! What a very long day for you and your parents! Dr. Kays must have been saving his favorite patient for the end of his day 🙂

You look beautiful in your Daisy Duke outfit!! Your parents are looking pretty sharp too…your mom still has the most shiny hair EVER!

Good news about your weight gain and your lungs are getting healthier and healthier.

So, I know going to Colorado is going to be a HUGE road trip but it is one your parents have dreamed of for over a year! You are going to love your room!! Your home is going to warm your heart (and your toes in the winter)…but you know that “home” is wherever you and your parents are it’s really not about the physical dwelling.

Big changes coming your way. I am very excited to hear about your adventures. Maybe you will share them with me in person…California is just a hop skip and a jump away from Colorado!!!

Your beautiful eyes are going to shine extra bright in Colorado Sweet Bun! Can’t wait to see what you see!

You are all so loved.


Steve and Joan Odell on May 14th, 2008 at 6:11 am #

Fantastic news!!!We’re happy and relieved that she gained some weight and her x-ray is so good. One step at a time works well for Ella. Lord Bless – Steve and Joan

Kristen on May 14th, 2008 at 7:02 am #

Amen, who invented that terrible contraption for chest x-rays for little ones????? I have had a child suffer through and it was miserable. *Sigh* Blessings to you as your enjoy a day of recovery today. You have made so much progress it is mind boggling. God is good! Love, Kristen

Dawn Franck on May 14th, 2008 at 10:51 am #

What great news, a good chest x-ray and a weight gain!!! I’m sure you are all keeping busy planning your road trip, I am praying that it will be a smooth transition back to Colorado for all of you. From the pictures I think you may need a trailer just for Ella’s adorable little outfits and a tote on top of the car for her cute hair accessories…LOL Anyway, hope you have a great day. I’ll check back in tomorrow. Lots of love, Dawn

Eli Brown on May 14th, 2008 at 11:08 am #

I love that last picture of the bun. You can tell she is happy and healthy. Ella is one strong little girl. We are so proud of all of you. We are praying for a safe trip home.
Much love,

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