Ella sustained her stats throughout the day. When I went to visit her, her blood gases and saturations were good.

Also, they began feeding her the small amounts of my milk throughout the day and she tolerated it just fine. Keep in mind that since Ella has not had to digest any food up to this point, her intestines are at risk of not working. In other words, it is almost like they can atrophy because they are not being used. So the purpose of supplying the smallest amount of my milk was to entice the cells in her intestines that there will be real food coming at some point! In any case, it is a good sign that she tolerated it well.

Visiting her today and tonight was rough. We did have several concerns and the nursing staff was not effective in answering our questions. Unfortunately, that tends to make things worse and makes us wish that we had a direct line to Dr. Kays, so he could alleviate our concerns.

Even though Ella’s stats are good, her swelling has not reduced. So far, it doesn’t seem like the invasive SVC procedure has made much of a difference. This means that there is a good chance that the procedure will need to be repeated. In addition, her head swelling was much worse tonight versus 24 hours ago.

On top of all of that, Ella just seemed very out of it. We are not sure if it is because she was just real tired or if it was an indication of anything. On Monday morning before the procedure, you would talk to her and she would look around and respond to your voice. She hasn’t been doing that since the procedure yesterday.

When you see these types of side effects and the SVC procedure is not something that this hospital or staff has a lot of expereince treating, it starts to get the best of you!

Honestly, it is probably nothing. Our perception is that she has worsened, but I think we are just nervous about everything that she has been enduring.

If you would, please join us in praying for our little girl: that we will see fluid reduction from her chest tubes, her overall swelling would reduce significantly(especially her head), and her superior vena cava issue would resolve itself. Also, that tomorrow will be a better day for her parents!

As we prepare for a night’s sleep, we rest in His promise:

Isaiah 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thanks for all the support from everyone. Good night!

Ella had a good night – – we were at the hospital until 12 midnight just hanging out with her and nurse Janet. She was peaceful and sleeping most of the time. I had a great time just holding her feet and having her grip my hand while she was sleeping. I could have stayed there for hours just staring at her beautiful little face.

We called to check in on her this morning and she continues to do well today. Her stats remain stable and blood gases have been in the acceptable range, given her stage of recovery. We are still waiting to see if her fluid reduction will decrease by the end of the day along with the swelling in her head, based on her SVC procedure being completed. She is continuing to receive heparin to thin her blood and prevent clots in the superior vena cava.

As we mentioned in an earlier post, I was pumping every 3 hours for Ella. During that time, the NICU collected and froze my breast milk. So, starting today they will be inserting the feeding tube and beginning to try feeding some of that initial breast milk from the frozen supply (1 ml every 3 hours). Hopefully, her little body will be able to handle the minimal amount.

Unfortunately with 2 rounds of mastitis, I have lost my milk supply and will not have the opportunity to continue to provide breast milk to Ella. However, at least she will have some of the initial breast milk which is better than nothing!

Ella’s next milestone is steady fluid reduction. Currently, the fluid is filling up the space in her chest which is hindering her lungs. Without continual fluid reduction, she won’t be able to progress forward.

By the way, Grandma headed home yesterday right before Ella’s SVC procedure, but she sure enjoyed her time while she was here!

Thanks again for all the posts. They provide such encouragement, love and support during this tough time. And of course, without your prayers, we know Ella would not be making the progress that she has made so far.

Thank you Lord for our friends and family. Thank you for their tremendous support and encouragement during this time. We ask that you hold Ella in your hands and continue to heal her body.

We also want to lift up a special person today that is receiving surgery. His name is Georgie. Lord, you are the great physician. We ask for no complications and perfect techniques by all the staff performing surgery at MD Anderson today. We pray for complete healing and quick recovery. We thank you for this brother in Christ – he is such a blessing. We lift up his family too, especially his Mom. She has traveled to be with him at surgery time and we pray that she would be surrounded with your love and comfort throughout today.

Once again, we praise you for the blessing of Ella Renae and the opportunity to glorify you in the midst of this storm. Thank you Lord.