Our Daughter Ella…

On January 20, 2017 we woke up to what seemed like a normal morning. My husband left for work, my son was getting ready for school and I was preparing to teach history at our co-op class. I noticed Ella, our youngest child, was sitting at the table with her cereal. She had her arm stretched out and her head resting on the table. I walked by and then turned around quickly. Something inside of me immediately wanted to check on her. I asked her if she was feeling okay and felt her forehead. Ella’s response was a shrug of her shoulders. My brain started down the path, hmm maybe she didn’t sleep well, maybe her blood sugar is low, I hope she is not fighting a cold. I got her something to drink and as I poured her milk, I heard a cough. I then noticed she was throwing up. Part of me felt a relief, okay she just might be fighting something.

So I guess I should go back and explain that Ella has a VERY high pain tolerance. It’s one of the remaining side effects from being born early. Ella was born 16 weeks early in my pregnancy. She weighed just 1lb. 6ozs. She was in the NICU for 171 days! She had heart surgery (PDA), kidney surgery twice, eye surgery (ROP), Tubes in her ears and her belly tapped twice. She got septic three times in the NICU with Gram Negative. One of the times the infection went into her bloodstream and shut all of her organs down. The doctors told us we only had 48 hours left with our daughter. They reported there was nothing else that they could do. Our 7 week old, 3 lb. baby swelled up with fluids as her organs shut down. It was the most painful, heart  wrenching two days of our lives. We prayed, we cried, I screamed. It’s honestly hard to sum up how we felt but we did not let up asking God to please save our daughter. It’s really a long story, that’s why I’m writing a book 🙂 …anyways the amazing thing is, right around 36 hours after the doctors told us we would be saying goodbye to Ella, she started to respond to the medicine and slowly recover. The doctors could not explain it but we were thrilled!

So back to Jan. 20th, I just had this feeling that I need to keep a close eye on her that morning. About an hour later she looked exhausted, threw up again and I finally noticed that she really was not talking much. Something just told me to take her to the ER. I carried her to our car and the fact that she did say, “Mom what are you doing?” I just knew something was not right. I called my husband and my older daughter sat in the back with her sister crying as she held her sister up in the car. We were taken in right away in the ER. It felt like a blur of questions as I watched them work on my daughter who seemed life less by the minute. We were there no more than ten minutes and the doctors were placing Ella on a vent. They told us that she would be Bayflighted to John Hopkins Hospital. It happened all so fast and I could feel the stress that I felt in the NICU coming back.

After they Bayflighted her to John Hopkins Hospital, They started running all kinds of test. EKG, EEG, MRI, Cat Scan, lots of blood work, X rays. One by one over the next 5 days came back good, healthy. The only thing they found was just a little fluid in one of her lungs. The said it could be pneumonia but then the small amount of fluid cleared up so fast that they out ruled pneumonia. Either way it was crazy! She was on the vent, lots of medicines and monitors and one by one she came off them. As soon as the sedatives got out of her system I could see Ella coming around acting like herself other than a little tired.

The doctors were so puzzled by her recovery and all the testing showing that she was healthy. So they leaned towards a diagnosis of a seizure. Preemies are usually at risk for seizures. Even though we had never witnessed any seizure activity. We wanted the doctors to run any test and find an answers to what caused our daughter to get sick and have some sort of respiratory distress. They ran a 30 minute and a 24 hour EEG and both came back seizure free. Ella was such a good sport about the whole thing! I think she looks pretty cute here.

Ella with her big brother and her big sister getting the 24 hour EEG.

Our family is close, it was hard on all of us. I called my son who was still at school to tell him what had happened. It’s hard to hear your 16 year old son cry. Being 5 years older than Ella, he witnessed her go through and overcome so much. Honestly she has been very healthy since she was over 3 years old. Other than going to therapies and had some delays but was healthy. So this threw all of us for a curve. Ella’s big sister had just witnessed her being put on a ventilator in the ER, so she was completely stressed out! Ella’s dad (my husband) met me at the ER and was being as strong as he could. He did better the first day, while I fell apart. The second day I got focused and went into advocate mode, while he fell apart 🙂 I refused to leave Ella, no one could talk me into going home. I stayed with her and asked my husband to stay with our older kids to try to keep things some what normal. I knew they needed one of us at home but I know Ella’s medical history, I carry it in my brain and rattle it off to doctors throughout the years that sometimes they don’t even look at her chart as much as listen to me. So the kids and my husband came up each day to see Ella. It was very hard on them the first day. I watched their hearts sink into their chest as they saw their energetic sister lay still and be one a ventilator.

Thank God she was not on it long! The doctors tests kept coming back negative. Everything looked good. I started asking the doctors to remove the vent and told them. “You don’t know how strong she is. If everything is coming back clear, please cut back on the sedatives and make a goal to remove the vent.” I could see they were still concerned because they had no answers but Ella was beginning to stir more and pull on the vent. She pulled out her own vent when she was in the NICU! My baby girl is strong. Once they removed the vent and weaned her off the strong medicines. She was talking, eating and making the nurses laugh.

We were able to leave the hospital with a Nero follow up. Which went good. All the blood work came back clear. They ran another MRI which came back great. Ran another EEG and the doctor said “It was perfect!” They never figured out what had happened that day but they did say whatever made her sick, She bounced back from it so fast that they could not trace it!

It’s been about 5 months now and she is doing amazing! I still keep a close eye on her but she is back to her normal, silly, energetic Ella that we love!