Posted (Tina) in All Posts on September-29-2007

Ella had a bit of a rough day again.

When she was sleeping, she appeared to be fine. Her blood gases and saturations were in the acceptable range. But in between, she had a few episodes.

All the normal things to calm her: suctioning, changing her diaper, switching positions, placing your hands on her head and feet, talking/singing to her…none of these were good enough. She would get so upset that her skin turned a deep red/purple color.

In those moments, I think she is scared. She is having a tough time breathing and she gets upset. When she gets upset, she creates more secretions in her airway which make it even tougher to breathe. From there, it spirals and the situation gets worse. At that point, the ventilator can’t do its job either.

Emotionally, it is tough to watch her struggle and feel so lousy. You want to take it all away and make it better for her…and you can’t.

Dr. Kays came into the hospital to take care of another baby and stopped by to see her. Her chest tubes only let out 3ccs for the day, so he feels like the fluid issue is resolved (otherwise we would see more coming out). But now, we have a different problem and he is not sure what it is.

His best theory is that this is a delayed response to something that was stirred up from the surgery on Wednesday. Although not much was done, that is the only variable that has changed dramatically for Ella.

He feels confident that she can get through this challenge, but we need to keep her stable. At this point, if she turns the wrong direction, she is at a high risk to go south fast and it may be tough to get her to turn around.

With this new challenge, Ella has taken several steps back in her progress. There were times today where they had to sedate her and turn up the oscillating ventilator to 100% oxygen, just to calm her down. If you remember a couple of weeks ago, Ella was maintaining well with 35% oxygen on a standard ventilator.

You can just tell that she is having a tough time breathing. Dr. Kays and I were at Ella’s bedside and he was looking at her, thinking and pondering about what could be happening.

I have been praying that God would give Dr. Kays the wisdom to know the next best steps.

I felt prompted to ask him about Ella’s scar. A few days ago, her scar was clear – – you almost couldn’t see it. It was healing so well. Now, her scar looks pronounced and bright pink. All of a sudden, he said, “systemic inflammatory reaction”. He walked away slowly to the nurse’s station, exchanged a few words with Dr. Saxonhouse, and sat in the chair pondering a bit more.

Then, he stood up with a confidence and walked over, “It’s time”. We knew that he was referring to steroids. They can take 24 hours to begin showing a positive effect. Then, he went through and explained about how he has been debating about giving her steroids the past day or so. When I asked him about the scar, something in him triggered and it makes him feel like now is the right time.

Although there are risks, the steroids will help her body fight off the inflammation. Immediately, Josh and I felt such a peace about this next step. We know that something is not right with Ella. And this time, it feels different than the other challenges we have faced. It is an infection or something outside of the standard set of issues that CDH babies are known to encounter. We sense that if we wait too long it might make things worse for Ella.

And through all of this, she is such a strong baby girl. You can sense her sweet spirit and her willingness to keep fighting.

During our visit, she woke up and looked around for 5-10 minutes and remained calm. This was not something we had seen from her the past couple of days. It was her way of letting us know that she is still holding on, despite the numbers.

Thank you for your prayers. He hears all of them and collects each tear. Ella is drawing all of us closer to our Creator.

monika on September 29th, 2007 at 7:59 pm #

dears tina josh and ella, i am praying and crying with you. ella you are such a trooper and will face the rest of your life with such strength after these huge earliest hurdles you keep getting through. you are all examples of living faith for so many, it is truly humbling. i love you. GOD BLESS AND KEEP YOU, monika and family

Kelli Billman on September 29th, 2007 at 8:21 pm #

My heart is smiling wider tonight after reading this recent post. The calmness in your words has come across loud and clear. Your daughter is a testimony of strength many of us as adults dream to have.
1 Th 1:2-3
We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor promted by love, and your endurance inspired by hope in our Lord Jesus Christ.
God Bless you West Family, may you have a peaceful night of sleep.

Joan and Steve Odell on September 29th, 2007 at 9:16 pm #

We could not have expressed our care for and faith in the two of you and Ella any more completely then our dearest, sweet daughter-in-law, Kelli’s, above post to you tonight. We have all received awesome blessings and deepened faith because you have welcomed us into your family and allowed us to share in your special journey in faith and love. We will be going to bed shortly and our prayers will continue for Him to resolve this latest issue, for His continued grace and strength for Dr. Kays and her caregivers – may He hold Dr. Kays steady and unwavering in listening to our Father’s directions for dear, dear Ella. And, may He shower His blessings on and protect Dr. Kays and his family. One day He will welcome him with, ‘Well done, my good and faithful servant’. I feel that you will receive restful and healing sleep and awaken refreshed and Ella will stabilize through the night. Your observation of your baby and the issue with the scar was magnificent. The two of you will sometimes pick up on things that her caregivers may not see as they look at the larger issues. Praise God for leading you to her scar. NEVER think that anything (however small or different) you see is not worthy of mentioning. Lord Bless your dear, sweet and faithful hearts!! Many hugs and smiles tonight == Steve and Joan

Anne on September 29th, 2007 at 9:20 pm #

God bless all of you through the night — one day at a time; one night at a time.

Char Snyder-Jordan on September 29th, 2007 at 9:42 pm #

We are so very proud of your courage and love for this beautiful spirit. We know Ella is a trooper. We know too that you and Josh are growing because of this experience. Gird up your loins, fresh courage take. Your God and Savior will not forsake. LoL Aunt Char and Jim

Joel Snyder on September 30th, 2007 at 3:01 am #

Tina, I am at work as you can tell by the time of this post. I didn’t get a chance to read your evening post until a few minutes ago. I am so proud of you and Josh and my little “Gator Girl”. I have a feeling that you may have found the answer to Ella’s problem. Just a hunch but I am praying that is the case and that Dr. Kays has the clue he needed. I will check with you again tommorrow. Love, Grandpa!!!!!!!!

Adrienne (Melissa's sister!) on September 30th, 2007 at 5:20 am #

Wow. I have to echo the post about this whole thing with Ella really challenging me in my own personal life as I seek to pray for her as well as others. It’s something that I have really wrestled with espeically since becoming a mother – the whole TRUST thing and to hear that others have been challenged in similar ways. This Friday in our class as I shared my wrestling with God in *how* to pray for Ella, I was reminded that we are continually called to PRAY IN FAITH – BELIEVING and I was humbled to be reminded that God’s heart is always FOR US – and how much more as we truly walk through this difficult time with both of you – you have to know that there are many people across the world checking your website and praying along with you. We are not related by earlthly blood, but in the eyes of eternity, we are truly united through Christ’s.

Minute by minute, second by second, may you walk each moment in step with the Spirit’s leading. It seems that you heard just what you needed just when Dr. Kays needed it as well. (Does he know that we are praying for him as well? I get the feeling that he is not a believer, but may this be an instrumental step in his own beginning with THE MIRACLE WORKER himself.)

Knee Prints for you guys,


When Ella is healed, it will be SO CLEAR to all involved and all around her throughout her precious life that it was TRULY a miracle. It will be such a testament to the power of the Lord. His ways are not ours – it seems easiest if He would have just done it already, but the Holy Spirit is truly in this. (Acts 3:12 Why do you marvel at this? Or why look so intently at us, as though by our own power or godliness we had made this man walk?) All praise will be due HIM and you won’t even begin to be able to go through a day without being reminded of His faithfulness to you!

Stay strong and know that HE WILL CARRY YOU!

deanna on September 30th, 2007 at 6:51 am #

wow ella is such a trooper!!!!! yesterday
we went to the store and bought ella ghost booties an a hat they might not fit but they weren’t expensive
keep on rocking

Joan and Steve Odell on September 30th, 2007 at 8:17 am #

Good morning from Oklahoma == how is our sweetheart this morning?? This is the day that the Lord has made, we will rejoice and be glad in it!! Hugs

Rosings on September 30th, 2007 at 9:22 am #

We can’t even imagine what you all are going through right now. Thank you for continuing to be so open and honest about your thoughts, your faith and your struggles. We pray for sweet Ella and that God will give her comfort at the same time the strength to keep fighting.
“The LORD will fulfill his purpose for me; your love, O LORD, endures forever— do not abandon the works of your hands.” Ps 138:8

All our love,

The Rosings

Rosings on September 30th, 2007 at 9:23 am #

Forgot…also praying for continued wisdom and insight for Dr. Kays.

Tammy on September 30th, 2007 at 9:25 am #

My thoughts and prayers are with Ella and her family today. May the Lord give Ella’s doctor’s wisdom and Ella the comfort she needs to rest and heal.

Steve & Veronica on September 30th, 2007 at 12:05 pm #

hey guys – we’re still praying for baby Ella. btw – V was given steroids as a baby (toddler?) and she seems to have turned out ok! 🙂 we’ll pray that Ella improves rapidly after this new treatment…

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