My heart is heavy.

I spent all day with sweet Ella. From the moment I arrived, I could tell that she was still not feeling well. As I held her in my arms, her breathing was heavy and strained. She seemed a bit more puffy than usual and with the slightest bit of discomfort, her agitation went off the deep end.

Holding her in my arms seemed to work for about 2 hours. From there, she woke up feeling worse and would not calm down. Earlier, I expressed that I wanted to make sure and speak to Dr. Kays at some point today. When the nurse practitioner realized that Ella was worsening throughout the day, she paged Dr. Kays because I think she was not sure what to do with her.

The chest x-ray this morning showed that Ella’s left lung has collapsed. This explains what happened last night and why her breathing was so labored throughout the day.

When Dr. Kays showed up, we discussed all the changes that had taken place in Ella over the past few days: the sprinting technique, the picc line falling out, receiving morphine orally, her fussiness, etc.

After discussion, he decided to request that a new picc line be inserted. He ordered for her feedings to stop immediately and for her to receive lasix via the new picc line. Additionally, he ordered some blood labs to be completed. He wants her feedings to stop because he thinks that she might be aspirating a small amount of spit up into her lungs each time she refluxes. He wants the picc line re-inserted because he noticed that her urine output has decreased since she started taking lasix orally on Thursday. Finally, he wants to leave her on CPAP with a pressure of 6 at 50% oxygen. If she does not improve overnight, she may need to be re-intubated.

We discussed the nissen surgery and g-tube. His original plan was to perform it on Wednesday, but he needs her to be healthy and stable. If she is not well enough, he will look to perform the surgery next Monday or Tuesday.

I asked if the nissen surgery might cause fluid build-up in the chest again. He noted that prior nissen procedures have not had that result, but there is always a chance.

Also, I asked him about the gortex patch that she has under her repair scar along her abdominal muscles. If he is going to use the same place for the incision, would he be removing the additional patch? He confirmed that his plan is to remove the extra gortex patch along her abdominal muscles.

Although this is another low point for Ella, Dr. Kays still feels confident that she can come out of it. I did catch him rubbing his temples and noting that she is a challenge. That’s my girl!

My heart is heavy because it is so hard to see your baby take small steps forward, only to pause and take several steps back. She has been through so much in her short little life. It is so hard to watch your baby in pain and not be able to take any of it away. It is a helpless feeling.

I’m sure being a new parent is frightening experience for everyone. However, I found myself feeling completely inadequate today. Although I know that God chose me to be Ella’s mother, I found myself asking Him,”Why me?” I don’t feel strong enough Lord”…Fortunately, I was still and heard His voice amidst the beeps of the pumps and the CPAP. In that moment, He ministered to my heart…His plan is perfect…that He did choose me. Also, He confirmed that I don’t have the strength…but that I have to rely on Him for strength…continually…each day.

When I left Ella, she looked more comfortable. They gave her a round of versed (sedation) to put in the picc line. Unfortunately, they were not able to get it in and instead have a temporary IV in her food to administer the meds.

Please pray for Ella – – she is undergoing so much discomfort. Please pray that her left lung will re-open and expand, so she can get over this hump to a more stable place. Pray that she will gain enough strength and that the Lord would prepare her body for the nissen surgery.

We know that Par is doing well – Praise God. Please continue to pray for his recovery. We have not had the opportunity to run into Jonathan’s parents, but see that he is still on ECMO. Please pray for him too.

Finally, please pray for me and Josh. This is so tough and we are weary…we are tired.

Thanks for all the support.