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.

Lesli on February 12th, 2008 at 7:58 pm #

We love to see all the pictures of beautiful Miss Ella. You are in our prayers constantly…I know this must be really tough, being the ones responsible for her care and all those critical decisions 24/7. You are the hand-picked-by-God parents of this precious little girl, and are more than able as you walk in his strength. We will pray for wisdom and discernment (and sleep) for you all. Love, The Richards

Williamsburg on February 12th, 2008 at 8:02 pm #

Please tell Baby Ella “Happy Valemtimes Day” from her BFF, Maren =) It means so much to all the kids to see her each day and get updates on how she is doing – we should record their oooohs and aaaahs and coos at how cute she is. I need their precious, 100% faith sometimes to remind me of Who is in charge every minute. Give that precious girl Valemtimes kisses from all the Williams and share some between the two of you, too. We love you. XOXOXO

Steven and Terri Trainer on February 12th, 2008 at 8:13 pm #

So glad to hear that your appt went well. Praying that things will continue to improve. We love you and miss you very much. Know you are in our hearts and prayers daily. xxxooo – TT

Tracy Schultz on February 12th, 2008 at 9:30 pm #

You guys are doing great as first time special needs parents! You are handling everything like champs. She looks just wonderful !
Take care!

Joel Snyder on February 12th, 2008 at 10:22 pm #

Ella, You are looking very good in your pictures today. I will be praying that you will continue to progress with your feeding issues. Tina and Josh glad to hear about the car and hope that things will settle with time. Keep up the good work with Ella. Love,Grandpa!!!!!!!!!!!!

Char and Jim Jordan on February 12th, 2008 at 10:47 pm #

WE think you are wonderful,incredible and great parents. Keep up the good work and experiment to see what is feasible with the beautiful baby. She looks great. I hope you two are half as well kept. LOve,Jim and Char

Raewyn on February 13th, 2008 at 7:15 am #

Hi there
You don’t know me but I follow your progress every morning and have done so since september last year. I think you guys are fantastic for all your strength. Ella is beautiful and that smile starts my day on a good note. You guys affect more people than you realise.

I hope you don’t mind and I am sure you are getting lots of suggestions but have you tried feeding Ella in a upright position. I don’t know if it will be of benefit to a baby that has all the challenges that Ella faces but thought I would mention it just in case it helps. We used to feed my nephew in his carseat because of his reflux as it helped to be slightly upright. Now as for g tubes and all the rest I don’t know if this applies. Good luck with your feedings and thank you for your blog. It is a little ray of sunshine every morning.

The Brittain Family on February 13th, 2008 at 7:51 am #

You guys are doing awesome. It must be affirming to see that she is growing under your very special care. God is giving you the wisdom you need to care for your little bundle and we praise Him for that and for you. One apparatus that’s helped our family tremendously through respiratory issues is a simple “cool mist” humidifyer. We like the Vicks brand. It was more effective than any pediatric meds. (that are now discontinued anyways) and alieved chronic breathing issues for the little guys. Only you will know if it would be worth a try for Ella, but thought I’d share. Hope the appointment and work project go well for you today. We keep Ella in our prayers!

Joan and Steve Odell on February 13th, 2008 at 9:07 am #

Dear Ones – my goodness she just gets more beautiful. We love looking at her pictures and all of you guys too. Please note our email has changed so that we continue to hear from you. So glad your car issues are resolved. Prayers and love continue for the west family. Love and hugs – Steve and Joan

Dawn Franck on February 13th, 2008 at 11:19 am #

Hi Tina and Josh, I’m glad to hear that the Dr. appointment went O.K. I have been thinking about you guys all the time with all of the challenges you have faced. You are both doing such a great job of getting the best care for your baby girl. Stay strong!Lots of love, Dawn, Mike and Alli

Adrienne - Melissa's sister on February 13th, 2008 at 12:47 pm #

Lookin’ GOOD! So happy to read such a ahppy-go-lucky kind of update…. of course we’re still praying!

Love to all of you!


P.S. Thos esmiles are just BEAUTIFUL!

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