Ella Bun had a stable day as she hung out with Nurse Marla.
When Grandma and I arrived, she was a bit fussy. I think she was over-tired. She wanted to be held and rocked to sleep, although it took several tries before figuring that out! Once we were in the rocking chair with just the right rhythm and position (and of course you must have the binky), she finally settled in and took a nice cat nap in my arms.
Her fentanyl was dropped a bit as of 10pm tonight. There are probably 2 more scheduled weans before she is completely off the pain medication. She is still at a CPAP pressure of 5 at 45% oxygen. The plan is to drop the CPAP every 2-3 days that she remains stable, all the way down to a pressure of 3. This will probably take another week or so. From there, we will see if she can handle the nose cannula.
Grandma is leaving tomorrow, so tonight was her last time visiting with Ella until she is out of the hospital. She will certainly miss having Grandma talk and sing to her!
Nurse Marla stated that she thinks that Ella is making great progress since her nissen surgery — that she looks the best that she has ever seen her.
A new nurse has Ella tonight – – so it made it that much tougher to leave. I am hoping that Ella sleeps through the night just like she has done the past 3 nights.
Par is struggling a bit with his eating (lack of a desire to eat). Please pray that he would begin to be interested in eating and that he would not encounter any further struggles. Jonathan has been making small steps forward since his repair surgery, although being on ECMO is holding up the process. Please pray that he can make the continued progress in the next couple of days, so that Dr. Kays can take him off ECMO.
Ella’s lungs still need to continue to strengthen, so we pray that the Lord would continue His healing. It would be a great holiday gift for Ella to be strong enough to no longer require CPAP. As we have already experienced, we need to trust in His timing.
I started to research the doctors in Denver that can help us take care of Ella on an ongoing basis. As you know, Ella’s care is not straight-forward and we need to find a network of doctors for her care. I am not comfortable making the trip back home unless we have a network of doctors in place. I want to know there is someone to call, as we make our way towards our front door. We will be coming back to see Dr. Kays annually, but our intial search is for a pediatrician and a pulmonary specialist.
We want His best for Ella Renae. Please pray specifically wisdom, guidance and discernment. Ask for the Lord to help us listen and hear His still small voice.
Proverbs 16:3
Commit to the LORD whatever you do,
and your plans will succeed.
Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Joel Snyder on December 3rd, 2007 at 11:20 pm #
Ella, You look absolutely marvelous with your Mom. I am praying that you and your friends Par and Jonathan keep up steady progress. Say bye to your Grandma for me. I am also saying a special prayer for your Great Grandma tonight. I will check on you tommorrow. Love, Grandpa!!!!!!
Williamsburg on December 4th, 2007 at 4:46 am #
Tina, what precious pictures of you and your daughter – there is absolutely nothing like the feel of your baby in your arms – what a terrific mom you are. In addition to praying continuously for Ella’s strength, stability and forward progress we are also praying for God’s wisdom and provision for the network you all need for her care, wherever that may be. Whoa, that was hard to say, but we want the best for Ella and trust in God to provide that. Glad your mom was able to visit and interact with Ella. We miss you guys so much but are content knowing Ella is making forward progress. Hugs always, XOXOXO
Roxie (Adrienne's friend) on December 4th, 2007 at 6:24 am #
Look at her!!! I just want to kiss those sweet cheeks!!! Praying for strength and discerment for you guys. Love to you, Roxie
The Brittain Family on December 4th, 2007 at 6:25 am #
We will keep praising God for Ella’s progress and will pray regarding the next steps: CPAP, med. weans, etc. We will pray especially regarding God’s leading in finding good medical care for Ella outside of Shands once she is ready for that step. God brought you so clearly to Shands and we will trust that He has a very special plan that He will reveal in His time. Looking for a very involved pediatrician who has connections to a good Pulmonologist and probably also a GI that specializes in the Nissen procedure sounds like a good goal to look for. Keep up the good work and doing your research and being Ella’s advocates! God bless. Know that you are not alone. What a sweetheart!
Avery Kronz on December 4th, 2007 at 7:42 am #
Dear Mrs.Tina, Ella Looks so cute with you in those pictures! I am praying for your family and par and Jonathan. Love Avery
Joan and Steve Odell on December 4th, 2007 at 7:52 am #
I agree with Nurse Marla – she looks better then ever – so very precious. As you know, the Lord will guide you to the physicians who will care for Ella – We pray for Par’s increase in ‘need to feed’ and little Jonathan. I’m sure that holding and rocking sweet Ella is such an incredible feeling. Prayers continue and hugs to all – Steve and Joan
JoAnna King and Kids on December 4th, 2007 at 8:28 am #
Good to see Ella doing so well. She is absolutely adorable. We are praying for a network of doctors here as well. We miss you guys and really want to see “Baby Ella”.
Char Snyder Jordan on December 4th, 2007 at 8:37 am #
Just listening to you talk about taking the baby home makes my goosebumps arrive. Having a crew to take care of Ella is essential. You did not come all this way with her to make an instant problem. We feel you will be lead to do what is right in the Lord’s eyes. He knows and he provides. Remember…he will not ask you to do something unless he will provide a way to do it. Keep still little family and listen to the still small voice. We will continue to pray for discernment for you and JOsh. LOL Aunt Char and Jim
Adrienne - Melissa's sister on December 4th, 2007 at 12:09 pm #
Wow.. isn’t it great to be even looking toward going HOME! Wow…. you guys have come SO FAR already! I remember the first day you held her and now you’re at least looking in the direction of MOVIN’ ON! Yeah! God is SO good and HIS timing is *perfect!* I will be praying for open/closed doors that will make your path CRYSTAL CLEAR!
Laura Marold on December 4th, 2007 at 12:47 pm #
I am praying you guys are able to find a good network of doctors wherever that may be…either in your hometown or locally to where you are now. You are both wonderful, caring parents. I know you will pray for the answer and that the answer will come. ALL of the decisions you make now are important and I will pray for you. Love, Laura M.
The Morgans on December 4th, 2007 at 1:30 pm #
I know how nerve wracking it is looking for doctors but it’s so great that you are able to worry about this and start thinking about taking her home. As we got to that point, I would thank God for these types of worries, I’m sure that after how long you all have been there you are more than ready to start preparing for her life back home.
Mollie Rosing on December 4th, 2007 at 8:54 pm #
Ella Bun looks so sweet…We’re thankful that baby steps are being made and that she is sleeping through the night! We will pray for the medical care decisions and doctor research. That has to be so tough. We will also pray for continued healing for sweet Ella’s lungs. All our love, Jim and Mollie and fam Post a comment
|
|
|||||||
|
|
||||||||