Posted (Tina) in All Posts on February-4-2008

I was raw emotionally today.

Ella had an “ok” night, but started having tummy/gas pains at 5am during her continuous feed. This was not something that I had seen before.

As of Friday night at her 6pm feed, they switched her food to Pregestimal. During the weekend, she was exhibiting lots of tummy/gas pain so they prescribed simethicone up to 4x per day. Up to this point, she had not required any type of gas medicine. Even with the simethicone, she was having lots of tummy trouble. I kept thinking that it was definitely due to the formula switch and also watching to see if she was stooling.

Surprisingly, she started stooling on a normal basis so her system was processing the food okay, but her episodes became more frequent and she started to become inconsolable. I was having to increase her oxygen each time because it was hurting her so much and making her so upset.

The last feed was this morning at 9am and it did not go without incident. Much of the same stuff over the weekend, but just intensified. She also started retching real bad. This was a new thing at this stage of the game.

At the same time, they came to tell me that the PICU was in need of beds and since Ella had stabilized on 500ccs of oxygen, it was time to move her back downstairs to the Intermediate Pediatric floor (which is where we were admitted last Wednesday). As you might imagine, I was not thrilled.

When I came downstairs to the new room, I was ready to feed Ella at 12 noon. As soon as I tried and let a small amount of food into her belly, she started crying hard and would not stop, so she pushed all the food back from her tube. I really think the food was giving her a tummy ache. I tried with that same feeding 4 times, at different rates, and every time she would retch and cry so hard that I had to increase her oxygen. So, she missed her feeding at 12 noon.

It was tough because I felt completely alone in the hospital. We went from the NICU where we felt like there were lots of staff that truly cared about our girl to this situation where we feel like we have little support.

Dr. Kays is the only one that makes decisions on her care. That is a blessing and a curse. It is a blessing because he is a talented surgeon and he saved her life. It is a curse because he is the chief of pediatric surgery – – he is VERY busy. And as such, when there are things that are wrong with our girl (like she can’t eat at 12 noon), no one is available to help us except Dr. Kays and he could not come around till 6pm or so.

It is understandable that he cannot come himself – – honestly, I don’t expect him to. His time is precious. But I would expect that someone on his team would be “responsible” to come up with a plan and run it past him. This way, they learn from him too.

In the NICU, he made the decisions for her care too, but you had a team of a doctor and nurse practitioner watching her clinically that were coming up with a strategy every day and passing it along to Dr. Kays for approval. On the pediatric side, you simply have the pediatric surgery team. If you think about it, Ella is not in need of surgery. Most of their patients have been admitted for a surgery and they are doing the follow-up and care for them. Ella is past her surgery needs for now.

All of this to explain that the experience is very different. The pediatric surgery team rounds at 6am and make a plan for the day and meet again the following morning. So when I have a problem with Ella during the day, they are not available to address my concerns. They are in surgery, for example. This is reasonable and I understand it, but it does not work well for a chronic baby like Ella that is complicated and needs ongoing attention. This is why the NICU with 24/7 care worked well for us.

Thank God for the NICU staff, or should I say the friends that happen to work in the NICU that have come to know and love Ella. Their support by stopping by and visiting Ella at the bedside has been awesome. A familiar face in the midst of feeling like there is no one that cares about us or Ella, is a great reminder that there are people in Gainesville that do care about us.

I cried several times today. This is so tough. My baby girl was in so much pain from the weekend and then starting early this morning, and there was no one available to address my concerns. Aside from her episodes, this new food was causing so much grief. This was discovered at 12 noon, when she would not accept the food at all. So from that time until 8:30pm, my baby did not eat. How is that possible when I am sitting in the hospital? Even throughout the day, she would have episodes and I was turning up the oxygen myself rather than waiting for a nurse. I just felt alone to deal with Ella and all her discomforts.

Dr. Kays admitted that she continues to be a mystery and doesn’t know why she is behaving fine one minute and having horrible pain the next minute. He came up with a plan:

  • He ordered an xray of her abdomen to make sure there is no bowel obstruction (although I really don’t think she has that since she is not exhibiting any symptoms).
  • There is a soft spot on her head which is normal for babies but feels like it has more fluid than normal, so he is having a consult with neurology.
  • He wants a set of labs drawn up in the morning, so he can determine if her levels are correct and if she is dry enough.
  • Based on her aversion to Pregestimal, he ordered for her to switch to Alimentum. She took her first feed at 9pm well (she wouldn’t take the Pregestimal earlier), so we are hoping that this is a good sign and that her system will tolerate this better.
  • Ella’s g-tube is broken (the valve is broken and remains open all the time). This makes it tough to feed and he is going to replace it tomorrow.

Please pray for a restful night’s sleep for all of us, Ella to tolerate her new food without issue, her labs to show that she has dried out, and her g-tube replacement to not be too painful (it will hurt her, Dr. Kays was honest about that fact).

Also, please pray for Dr. Kays. He got frustrated at me this evening when I explained my day and how unhappy I was with the system in place for her care. Please pray for him with everything he has going on (personally and professionally) plus discernment and wisdom for how to treat Ella.

We are hoping that we will be discharged from the hospital, but it would be nice to also make sure she is doing okay before we make that move. It could be 1 day or several. Right now, all of it is a blur.

Thanks for your love and support at this time.

Anne on February 4th, 2008 at 11:05 pm #

Tina – sorry to hear you and Ella had such a rough day. There’s nothing worse than knowing your baby is uncomfortable and not being able to fix it! We’ve all been there — you’re not alone!… hopefully this new formula will do the trick. Take some deep breaths and go easy on yourself!

Laura Sizelove on February 4th, 2008 at 11:19 pm #

From one mommy to another, my heart breaks for you. May the Lord give you rest and peace beyond explanation, and may he swoop in and put His healing hand on Ella and his wisdom upon Dr. Kays. Wish I could give you a hug across the miles, hang in there…

Eusey Family on February 4th, 2008 at 11:53 pm #

Our prayers are with you all. I love you all and wish I could do more for you. I cannot imagine how alone you must feel at times making decision that are so critical. Always know that I am on call for you all at any time of day or night.

I love you. God is with you.


The Laz Fam on February 5th, 2008 at 12:10 am #

We’re so sorry for the continual frustration and for mysteries without solutions. We continue to pray for wisdom – yours and theirs – and that each hurdle will be Ella’s last. We love you 3 so much! KTJB

Jennifer S on February 5th, 2008 at 5:35 am #

Hi Tina. I am friends with the Brantley’s and finally made it to visit your website. I just wanted to let you know that my husband and I have been praying for you weekly since we learned about Ella’s condition. It is heartbreaking to read about the pain your daughter is in and I can only imagine how thoroughly you must be leaning on God for strength to make it through each day.

Amy Sabatino on February 5th, 2008 at 7:24 am #

I was very suprised to see Ella’s room empty. I wanted to see you and tell you that I have been thinking of you and praying that all will be better now that you were in the PICU. I am sorry you feel so alone Tina. I was there last week and it is very heartbreaking. I want you to know that I am here and we should have lunch together sometime. I will try to call soon. amy

Kristen on February 5th, 2008 at 7:35 am #

The tears don’t feel great, but they are a gift. They reflect all the love you have for your preciuos girl. I am praying that Dr. Kays will assign an additional care giver team to be available for you when he is unavailable. Also, for the sweet BUN that she will reveal what is bothering her through these tests. In Him, Kristen

John & Estela Williams on February 5th, 2008 at 8:12 am #

Tina I am so sorry for how your day went yesterday, I pray that today God gives you new strength and anwsers about Ella’s test results. Continue to stay strong, love you girl!

Williamsburg on February 5th, 2008 at 8:43 am #

Dearest Tina (and Josh),
What a stressful, stretching day – we are aching for your stress, tears, frustration and aloneness, and continuing to pray for the peace that passes understanding in circumstances that, from an earthly perspective, certainly don’t seem to warrant peace! We’re with you in spirit and with all of our love. XOXOXO

Georgia on February 5th, 2008 at 11:06 am #

Hi, i have been following your blog for a while..i just wanted to let you guys know i am thinking and praying for all of you. I am a mother of a CDH baby girl. She is now almost 4 years old. I know what your going through..especially this post..i have had these exact feeling about a lot of your concerns. You guys will get through this. If you ever want to talk to someone who’s been there, please feel free to email me!

Dawn Franck on February 5th, 2008 at 1:15 pm #

Tina and Josh, I hope Ella’s feeding issues will be resolved with the new formla and I hope she will not be in too much pain from replacing her g-tube. I’m sorry that you are feeling frustrated and all alone in this. Just remember that you have tons of people going through this with you and we are all praying for you and your baby girl. Take care, love and hugs, Dawn

Adrienne - Melissa's sister on February 5th, 2008 at 1:33 pm #

Praying for all of you… just lifting you up before the Father knowing HE is in all the details and the fog of it all… it’s got to be so difficult – I can’t even imagine.

Love over the oceans,


Jeannie on February 5th, 2008 at 2:16 pm #

I had no idea that Ella had been hospitalized again. I hope she is feeling better and home again soon. Your previous social worker.

Char and Jim Jordan on February 5th, 2008 at 2:31 pm #

How lost we feel when we don’t have the answers. Dr. Kays must be so frustrated with the lack of ability to know what is happening and heartbroken this little one must suffer so much guess work. There is nothing worse than making anyone feel helpless, but a great surgeon, well you get my drift. It must be painful. We are praying for discernment for him.Patience for Ella and understanding for you and Josh.Ella’s Grandpa looks real natural. I bet he is thrilled to be there with you even though it is definitely soooooooo difficult and stressful. At least he is not in Denver where he cannot see your little family. We need a breakthrough for Ella. We will be fasting and praying for relief. We are here. Call anytime for someone who will listen. Give my brother a big hug and kiss for me. LOL Aunt Char

Tammy on February 5th, 2008 at 7:13 pm #

I just read this and let out a big sigh! You’ve all been through so much, but the lord is faithful and will provide the wisdom and patience to Dr. Kays so he can fix the issues and get Ella home.

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