Ella’s condition is the same – stable but no improvement. You might notice that she has a new head band – pink with hearts. So cute for all the girl babies in the NICU! She did take a few moments to look around and respond to Daddy’s voice.

The update on my condition – – thank goodness that I did not have to be admitted into the hospital. Although we were there from midnight until nearly 9am (we just got home), it is good that we decided to visit the ER.

I was diagnosed with Mastitis, which is a bacterial infection of the breast. I will need to take antibiotics for 10 days and get lots of rest.

Keeping this post short because I am falling asleep while writing it!

Ella’s stats are the same – – but not improving. Her bilirubin levels are continuing to increase, so they are running more tests on her liver. They increased the Lasix to try and reduce more of the swelling. Thankfully, they have not seen any more seizure activity since they medicated her at the initial sign of seizures. So, they were going to try and reduce the seizure medication — we hope the seizures will stay away!
 
This upcoming week with her surgery is a big milestone. Please pray for Ella’s strength and a successful surgery.
 
Also, her parents are exhausted! Please pray that we will be renewed by His strength. It is so tough to see this sweet little girl connected to all these machines, day after day, with no forward progress.
 
We know His timing is perfect and that He is in control. Holding onto these truths, and being encouraged and reminded about them by all of you, has been a saving grace. But it has not stopped the emotions from rising to the surface each day!
 
Lord, help us to trust you even more as we watch the fulfillment of your will unfold for sweet little Ella.

The past few days have been tough. It has been hard to watch Ella not progressing as much as we’d like to see. Even before we walked into the hospital, I had a good cry.
 
The Lord knew that we needed a bit of relief.
 
So when we went tonight, Ella woke up. We had not seen her awake for the past several days. To have a few moments connecting with her was such a gift. Her little eyes were open. She was alert. She was responding to our voices. She was holding onto our hands and gripping hard.
 
Ella was only awake for a few minutes and then she fell back asleep, resting peacefully. But, this was exactly what we needed. And when it happened, we both knew that it was a gift from Him – a detail so small, yet it transformed our sadness into renewed hope.
 
As we posted earlier today, please continue to pray throughout this week for Ella’s specific needs.
 
VIDEO CLIP
Below is a little taste of what we saw tonight. The video is about 2 minutes long and you’ll need a high speed internet connection to view it. Enjoy =)
 

Ella had a better day. With the ECMO machine turned back up to 160, her stats improved. This makes sense since the machine is doing more of the work.
 
We learned that they wanted to turn up the machine, so that she could have a break, but also so that they can change the circuit in the ECMO machine. We are nearing two weeks of Ella being on ECMO which leads to a great risk of blood clots in the machine. So, when they reach this point, they like to change out the machine and start fresh to minimize that risk as much as possible.
 
The latest news is that they will likely keep Ella on ECMO until next week. We don’t expect to see any drastic changes, like getting her off of ECMO, until next week.
 
Please continue to pray that Ella will gain strength throughout this week. Also, that her parents will hold tight to His promises during this challenging time!
 
Thanks again for all the posts – – all of you have no idea how much these help us!!!

 
Happy 2 weeks Ella! Look at the expression on that face…
 
Although Ella’s stats are okay, they are not great. The fluctuations have been a bit much over the past 2 days. Therefore, Dr. Kays decided to turn the ECMO machine back up to 160 this morning. He wants to give her body a bit of a break: her kidneys, lungs, liver, etc. As you might imagine, all the chemicals running through her little body can have some lovely side effects!
 
Normally, they try and keep these babies flat on their back before they have surgery to minimize the shifting of contents in their chest. Post-surgery is when they typically can place them in other positions. But in this case, Ella has a build up of fluid in her body, mostly evident in her back. So, they have propped her up more so she is resting on her left side and plan to prop her to the right hand side later today. To decrease the puffiness and fluids, they have increased her dosage of Lasix.
 
This morning has been an emotional one for Mom & Dad. Just part of the roller coaster ride experience. We just want our baby girl to be okay and it is such a tough thing to experience these raw emotions.
 
All of this is not in our control. The only thing we can do is cling tight to His promises. A supporter and prayer warrior that heard about our story emailed us recently with this verse: “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit” (Romans 15:13).
 
With this downturn on stats, this may not be Ella’s week for surgery. It seems that her body needs more time to strengthen. Please continue to pray for her body to heal and become strong…and pray that her parents can hold tight to the truth: “Be joyful in hope, patient in affliction, faithful in prayer” (Romans 12:12).

Dr. Kays decided to leave the ECMO machine flow at 120, based on Ella’s fluctuating stats. Her blood gas levels are in the same range – – not great, but stable. Her pO2 level when they checked at 8pm was still the 60’s. We are hoping that her stats will improve overnight, since she had a rough day.
 
While we visited with her tonight, she seemed a bit more alert and not quite as sedated. She was definitely taking the time to look around especially when she heard our voices.
 
Thank you for staying in touch on Ella’s progress. She has a long battle to fight and we appreciate everyone’s thoughts and prayers.

Ella had a tougher night – they drew her blood gas level at 4am and her pO2 level had decreased from 116 to 64. This is still considered “stable”, but the fluctuations are not real good. We would prefer to see her stats climbing steadily. Her blood gas level at noon was low too – – in the 60’s.
 
They are waiting to see how Dr. Kays wants to proceed. The ECMO flow is still at 120. We will watch, wait and pray that her strength continues and that God provides wisdom to Dr. Kays on the best way to move forward.
 
Ella’s monkey, Reneke, is making sure that the CD is playing now and then…providing comforting songs and voices.
 
Thanks again for all your support and prayers during this time. The comments from everyone on the blog are so appreciated!

We visited Ella this evening and she looked good. We waited while they took another blood gas test: her levels had increased from the afternoon test. This is a positive sign.
  
Dr. Kays was called into the hospital to treat another baby for an emergency and he stopped by to see Ella. He was pleased with her stats. Again, we hope that this will be her week for surgery. We are anxious to have her removed from the ECMO machine and to see her reach this very important milestone.
 
…and just in case you were interested, Josh wanted me to let everyone know that the name of Ella’s monkey is Reneke (rah-knee-key) 🙂

Ella had a good night – – stable and progressing forward. We don’t expect much news or changes to her care today. Most of the time, the weekends are mellow without drastic changes. For now, she is maintaining a steady path and getting stronger each day.
 
Tomorrow, we look forward to seeing if her ECMO level will be dropped further along with an update from Dr. Kays on when he would like to operate. We are thinking it will be sometime this week.
 
Please continue to pray that she gains more and more strength each day. We want her stats to remain stable once she is off ECMO and this requires a lot from her little body!

Since we met with Dr. Kays yesterday afternoon, the ECMO machine was reduced to 120 (we have been reducing in increments of 20, starting at 220). Ella is continuing to fight and her stats have remained stable despite the turn down in the ECMO machine. She is doing well.
 
Also, the seizure medication that they have placed her on is doing its job. She has not had any since they placed her on the meds.
 
Going to visit her is tough, but at the same time, is so good for the soul. She is sooo cute and has such a sweet spirit. She deals with the wires and discomfort like a champ.
 
We love her so much. Please pray that she continues to remain stable and gain strength. We would like to see her ready to have surgery this upcoming week.