Posted (Tina) in All Posts on November-19-2007

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.

Eusey Family on November 19th, 2007 at 7:29 pm #

Oh Tina, our hearts ache with you. We are sad that Ella has taken some steps in the wrong direction, but trust it is all part of the plan. Please know you are in our hearts and prayers daily. We will ask God to give you comfort and to put Ella back on the right track.

Ella’s cousins will pray extra hard tonight. Sweet Ella is what our family is thankful for during this time.


Laura Blackwell on November 19th, 2007 at 7:45 pm #

From another young mom, this update made me cry. You are in such a tough spot. I’m so glad you know the Lord and have Him to be your strength. Continued prayers.

Loren L. on November 19th, 2007 at 8:07 pm #

OHH i just wish I could give you guys a great big hug! I just know that although this seems like a series eternal of endless days that they will get better. She always came out better everytime she had a rough spot. We need to be strong and know that God is with you all the time and he knows all and carry that peace with you. It’s hard sweety oh I know and I don’t know and then I wish I didn’t know. We are here for you to support you and although its just in black and white know that you, Josh and Ella are in my prayers, And if I don’t pray for me I pray for all of you everytime. Oh my Gosh, where is that Joel Snyder, he always knows the perfect thing to say. Take deep breaths and know you are loved every where.

Kristen on November 19th, 2007 at 8:31 pm #

Okay, we will pray for all these specifics. And for Ella’s comfort. Tina, you are a wonderful mama. Above all else you are trusting your daughter to the Lord of life!

tamara tessmer on November 19th, 2007 at 8:46 pm #

Tina and Josh,
My heart aches for you. Words can not express how I feel. Please know that I am praying for all three of you. Please let me know if you need anything. I will come up in a heart beat.
In Christ,

Char Snyder Jordan on November 19th, 2007 at 9:02 pm #

Dear Little Family, we will continually pray for all the best health will be had for Ella,JOnathan and little Par. We know that being a parent is hard, but you and Josh have seen more agonizing hurdles than most. We will pray for your emotional sustenance to rebound. We know of such grief. We know you can do it. We have faith that the Lord has you in his hands. Remember at our very best we are weak and HE is strong. Take heart Tina and Josh. Make sure you get your needed rest to help Ella when this is resolved. We pray once again to have Ella continue in a more healthy way. We are heart broken because this is so difficult for all of you. We also know that Strength and Struggle travel together. We are confident you will rebound and get more strength. Please be patient. Patience is not passive it is concentrated strength. Gather your strength thru the LOrd. We are praying for a wonderful outcome for all. LOL Aunt Char and Jim

meg krawczyk on November 19th, 2007 at 9:15 pm #

although i do not know you, i have been checking ella’s updates everyday when i check on par. my family is praying for ella’s comfort and progress as well as strength for your family. i too have had some challenges this year as a mom and somehow when i dont think i have the strength i need, the Lord asks me to lean on Him, that He will provide me with what i need. your strength and perseverance is amazing and inspirational. please know you are in our thoughts and prayers. and ella is just beautiful.

Andrew Weir (a friend of Adrienne's) on November 19th, 2007 at 9:28 pm #

God chose you for this. Rest well. We are all praying and God has promised His faithfulness to you.

Roxie (Adrienne's friend) on November 19th, 2007 at 9:41 pm #

Just a quick note.. I will be with my Bible Study group this morning and we will be praying for you. Your Sister in Christ, Roxie

Williamsburg on November 19th, 2007 at 9:51 pm #

Oh my dears – it is nothing compared to what you’re going thru, but we all share that helpless feeling – wanting so much for Ella’s pain and challenges to be over and her parents to be allowed to do what parents need and want and are supposed to do – I don’t know whose journey has been harder – yours or hers. Tina, I am so glad you were able to hear God’s voice of love and affirmation that you are exactly the mother for Ella, incredibly difficult as it has been for all of you. No one but you could have the bond and be the comfort to that precious baby that you are, and no one but your heavenly Father could be the same for you (terrific as we all know your earthly dad is!) We’re weeping with you and petitioning your Abba for everything you, Josh and Ella need. Love you more than you know. XOXOXO

Jean Rich on November 19th, 2007 at 10:18 pm #

Dearest Tina and Josh,
My heart aches for you, but be strong by leaning on Him. I know this is so very difficult, but Ella will pull through! I pray so often for you, Ella, Jonathan, Par, and Rusty and Liz.
Love in Jesus,
Par’s grandmother Rich

Joel Snyder on November 19th, 2007 at 10:31 pm #

Ella, You hangin little “Gator Girl” this is a little step back before the great steps forward. I am praying for you Par and Jonathan tonight and Dr.Kays for the wisdom and skill to help you. Lord watch over these wonderful babies and help them in this time of healing. To Tina and Josh my steadfast warriors keep up the fight and take care of each other. I am saying a special prayer for you to have strength and patience during these times. Love, Grandpa!!!!!!!!!!

John & Estela Williams on November 19th, 2007 at 10:43 pm #

We love you guys and know that God will not leave your side. Continue to lean on him and through prayer Ella will make it out strong and healthy. God Bless

Tracy on November 19th, 2007 at 11:14 pm #

We are praying for you all over here. Remember, it’s during our own inabilities that we see God’s amazing capabilities! She is comfortable now. That’s going to make a big difference. Please rest knowing that Ella’s condition is not out of God’s sight or hands. This isn’t a race, you just need to finish! :0) Ella needs to take it slow-that’s just fine. So do you guys. Stay rested and know that the Great Physician is watching over your little one. You are who He picked to be her mommy and He will prepare you for that job day by day, minute by minute. When we feel inadequate, we can have peace knowing God is TOTALLY adequate! Praying for you…

Gloria & Red Jacobsen on November 19th, 2007 at 11:44 pm #

Praying very hard for your little Ella! She is a fighter and we all are her prayer warriors.We will persist in storming heaven with our prayers! Always Gloria & Red

Tammy on November 20th, 2007 at 12:37 am #

Ella has taken one baby step back….but the Lord will take the steps with her to move her forward again! His arms will hold you up and his strength will be your support. My prayers are with you all tonight.
God Bless

The Brittain Family on November 20th, 2007 at 5:15 am #

We’re really sad with you but also full of hope. Tell Ella she’s doing a good job. Praying for all of you.

Joan and Steve Odell on November 20th, 2007 at 7:33 am #

Dear Heart – I understand how difficult it is to watch your child suffer and know you don’t have the answers or ability to take it all away. Please know that it is okay to have these feelings and weariness. He is holding you close and will not let you fall. His love and understanding for you and sweet Ella is always there I am so sorry that Ella is experiencing these difficulties – our prayers will be for her complete healing and that she will soon have peace and comfort will return. We also pray for restoration of spirit for the two of you. Lord Bless and hugs – Steve and Joan

Monica Nash on November 20th, 2007 at 7:55 am #

Dear Tina and Josh – Obviously, you have many prayers and much love heading your way. I’m very proud of the parents you have become! Thank you so much for keeping us all updated. Although I don’t comment, please know I’m pulling for you from Southern California. I love you!! Hang in there… xoxo Monica

Avery Kronz on November 20th, 2007 at 8:17 am #

We are praying for Ella. We will pray the Lord will Keep you and Ella safe and that he will keep you strong. Have a good Thanksgiving, The Kronz Fam

Dottie (Adrienne's friend in Saudi) on November 20th, 2007 at 8:31 am #

Our hearts are heavy with you. Please know my bible study group is praying for Ella and you family here in Saudi Arabia. I keep up with your news via email. Our Love in hrist, HUGs, and Prayers go with you and the Doctors and staff caring for Ella!

Dottie (Adrienne's friend in Saudi) on November 20th, 2007 at 8:35 am #

Praying for you here in Saudi Arabia! Our bible study group is praying for Ella and your family. May the Love of God enfold you and uphold you in the days and weeks ahead. Love in Christ, Dottie

The Vodnik's on November 20th, 2007 at 9:04 am #

We are praying for all of you everyday, and for Ella to get stronger most of all. It is so difficult to see your child in pain and not be able to make it go away. Our thoughts and prayers are always with you guys.

Your friends at Dr Richard Wallace's office on November 20th, 2007 at 9:14 am #

Dear Sweet Ella,
We are all praying for you to get past this difficult time and for mommy and daddy to continue their vigil with the faith and strength their Lord has blessed them with.
Hang in there Wests!!! All our thoughts and prayers are with your family…

Anne & Bob on November 20th, 2007 at 9:41 am #

We met you at Shands the night of Par’s surgery. Know that you have been in our thoughts & prayers since and others in Gainesville are praying for Ella, Par & Jonathan as well. Special prayers today for Tina & Josh to regain their strength & perspective. Many blessings to you!

Lisa Correia on November 20th, 2007 at 9:42 am #

Oh Tina and Josh,
I just want you to know that we think you guys are amazing. We will be praying for your continued strength and that God would continue to help you through this long journey. Ella is in a marathon for sure and she is hitting the wall at mile 18 but this too shall pass. She is going to get over this hurdle and she is going to cross that finish line strong with her arms in the air and you guys right next to her and we are all going to be cheering Go West’s!!!!
We love you guys,

Marge(Indiana friend of the Mueller's-Chris' parents) on November 20th, 2007 at 10:33 am #

My prayers that God will continue to Bless each of you and hold all of you in His healing hands; may He give you peace and comfort along with strength and His guiding hand as you continue your journey with sweet baby Ella. She is truly an angel.

Sara & Kevin Allen on November 20th, 2007 at 10:43 am #

Know that we pray for you each day and check in on you and precious Ella. Our hearts ache for you in this latest trial and we can just feel your weariness. Keep the faith and know that we share your burdens in prayer. Matt. 11:28, “Come to me, all you who are weary and burdened, and I will give you rest.” We will pray you find rest in Christ in the midst of these latest trials. We are all wishing we could just hop a flight to Florida and give you all some big HUGS. Love, Sara & Kevin, David, Elizabeth, Hannah & Joel

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