Posted (Tina) in All Posts on November-28-2007

The Bun had another solid day of recovery.

She slept most of the night for Nurse Janet, one of her favorites. Then during the day, she spent a lot of time sitting up in her chair listening to her baby Christmas tunes and eyeing those that passed by her bedside, hoping to reel them in for some attention.

In the morning, her fentanyl was decreased slightly from 3.5 down to 3.0. Hopefully, they will wean this pain medicine just slightly every other day or so by .5 until it is discontinued. They have warned that since she has been on fentanyl since she was born, she may have withdrawal. On that note, we will be watching closely for changes in behavior.

Also, they decided to start Reglan and Zantac up again to help Ella digest her food and move it through her system. She was on both of these meds before the nissen surgery when they were feeding her, and just started them back today since she has reached full feeds. Her belly seems to be tolerating the full feeds of Portagen (20ccs per hour continous) and once again, we are happy to report several poopy diapers. This just means that everything is moving through her system as it should since her nissen surgery one week ago today.

Ella had another chest x-ray this morning, but Dr. Kays did not come by till around 2pm to assess and make any needed changes. The chest x-ray did look improved, but only slightly. He moved the vent settings down to 6 breaths per minute at 40% oxygen. His plan is to extubate tomorrow.

When I was visiting Ella, it seems about right to extubate tomorrow. We did not want this too soon, but at the same time, you can tell that the tube is becoming more and more uncomfortable for her. Although she was happy and we were having a nice time together tonight, she paused several times to gag on the tube.

We hope and pray that this is the last time that she needs to be intubated. Once we go back on CPAP, we would like to not look back and visit this stage again. It is just a matter of making sure that her lungs are strong enough and that she does not have any setbacks.

Par is doing amazing. In fact, he is doing so well that he will probably get moved to the NICU 2 within the next day or so. Today, his UAC line was removed and they had a chance to try feeding him with a bottle containing 1cc of formula. Although it was a bit different for him, he did seem to respond and swallow. Such great news. Please continue to pray that he can cruise through the next challenge of feeding.

Jonathan had surgery today starting around 3pm. When I left the NICU around 11:15pm, I could still look over and see Dr. Kays performing surgery with his team at Jonathan’s bedside. That is a really long time for surgery. I ran into Jasmine in the waiting room and she filled me in. Apparently, his liver was in his chest which came as a complete surprise to Dr. Kays (not apparent on the x-rays prior to surgery). In addition, Jonthan formed blood clots in his chest around his lungs. So Dr. Kays had to spend extra time delicately removing the blood clots. Please continue to pray that having the repair surgery will make a big difference and his body can truly begin to heal.

Two more baby girls have joined the NICU that are in the “CDH area”. We know one baby girl has CDH for sure, but are not 100% positive about the other baby. Either way, they are both on ECMO. We do not know the families or the baby’s names, but ask that you lift them up in prayer as well. Being on ECMO means that they are both very ill.

Josh left yesterday afternoon to go and visit his Grandma at the hospital in Southern California. She has been having a tough recovery. Her diagnosis is congestive heart failure. This means that her heart is not pumping as well as it should to deliver oxygen-rich blood to her body’s cells. It happens when the heart’s weak pumping action causes a buildup of fluid or congestion in the lungs and other body tissues.

So, it is somewhat similar to what has been going on with Ella. Grandma’s lungs are too “wet” and so they are giving her lasix to help get rid of the fluid. Earlier, they were not sure if her kidneys were functioning. Later tonight, we received a praise that her kidneys are functioning and therefore some of the fluid is leaving her body, making it easier for her to breathe. She still needs a lot of prayer. Unlike Ella, Grandma has an infection in her lungs which is making her recovery even more difficult.

Lord, help us to surrender and trust in you at all times, in all circumstances. You know the petition of our hearts. Help us to lay down everything in complete submission and wait on you for your direction, guidance and peace.

Psalm 9:10
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

Laura Blackwell on November 28th, 2007 at 11:37 pm #

Love that smiling face. Prayers for you and sweet Ella.

Julie on November 29th, 2007 at 12:16 am #

Glad to hear Ella is recovering so well. And it’s so wonderful that God has given you such a heart of grace and love that you can praise him for the strides baby Par is making, even when he may be passing your little girl, and that you can do it without jealousy.

I will keep praying on this end that God will sustain you and Josh. And for continued progress for your bun.

Roxie (Adrienne's friend) on November 29th, 2007 at 12:27 am #

Baby Bun, You have made this Nana yawn twice enjoying your picture. You are sooo sweet and precious. Okay God didn’t give us a perfect result with your lung exray…yet! But it is all in His will happen. You have new girlfriends in the NICU to join you and the boys. We will be praying for all of you and your specific needs. I’m glad Daddy got to go visit his G-ma Kathleen. Maybe your Daddy could sing her a little song too. I’m sure that she would be as comforted by that as you are. You give your Mommie sweet love and be a good big sister to all your buddys in the NICU. Lead the way little one. LOVE YOU BABY BUN, Roxie

Julie Kirk -Saudi Arabia on November 29th, 2007 at 2:56 am #

yes she is beautiful. She looks very alert and stronger. This time next year this will all be a bit of a blur and you will be trying to keep her out of the Christmas tree. God Bless

Joel Snyder on November 29th, 2007 at 5:14 am #

Ella, Good to see you looking better and feeling better. I will be praying for you and your Great Grandma to have improvement to your lungs today. I will check on you later. Love, Grandpa!!!!!!

The Dirirm Family on November 29th, 2007 at 6:45 am #

We are still here praying for you all. Ella is so beautiful. I love all your pictures of her smiling. May you remain strong in your faith and be a light for others while you are there. We will also be praying for Josh’s grandmother.
The Dirrim family

Lizotte Family on November 29th, 2007 at 6:51 am #

Ella you are looking radiant with that smile on your face… Which I know it’s the same smile your mom’s has! I’m praying for you to recover in the right pace for you.

Avery Kronz on November 29th, 2007 at 7:24 am #

I am glad that Ella is doing better! I hope one day I can see Ella for real. My little sister Laney loves to check on Ella. we will pray for you love,Avery Kronz

Joan and Steve Odell on November 29th, 2007 at 9:18 am #

She just gets more adorable every day. Our prayers continue for her and all the other babies and their parents. Our Father will be with each one throughout their journey. Prayers for Great Grandma as well. Hugs and love – Steve and Joan

Char Snyder Jordan on November 29th, 2007 at 9:19 am #

Once again, I am reminded of the wonderful skill and technology that has been available to Ella and the boys recovering or trying to accomodate an inhospitable environment. I feel blessed to have the knowledge that God has sent Dr. Kays and others to look over his babies. Keep up the good work. LOL Aunt Char and Jim

Andrea Thibault on November 29th, 2007 at 11:09 am #

Ella is simply adorable! I am keeping her – and all the other little ones in the NICU – in my daily prayers. I am also praying for Josh’s Grandma. God bless!

Jenny Talbott on November 29th, 2007 at 12:12 pm #

The cutest yawn ever… continue to think about you all and send nothing but the most positive of thoughts your way… will add Josh’s grandmother to those thoughts as well…

Merrilee Batchelor on November 29th, 2007 at 1:22 pm #

HI Tina , Josh and Mary,
I finally am visiting you today.
November 29.2007
Your Gramma sent me your blog
address so I can check you out
what a precious one, and all of my
love and prayers for her and her
new wee friends who are having surgery
and having hospital stay until they
get better, all of my love to all
of you.
Merrilee Batchelor
Temecula calif

Laura Arneson (Adrienne' friend) on November 29th, 2007 at 7:50 pm #

Sweet family, you are all so good for each other! We are still praying for you and knowing that each day with its challenges is God’s blessing, take special care of each other!

Melissa on November 29th, 2007 at 10:50 pm #

She’s beautiful. She’s beautiful.
She’s beautiful, it’s true.
There must be an angel with a smile on her face….
Ella, you are just too cute for words. I’m so glad to hear and see that you are doing and feeling so much better.
That is awesome that Par is doing well too.
We know that Jonathan and your other new friends are in God’s arms right now. He’s got all of you in His hands. He is so awesome and we praise Him for the progress that you are making.
We pray for strength for your mom and dad. Lord, continue to bless Josh and Tina and stregthen them day by day.
Day by day
Day by day
Oh Dear Lord
Three things I pray
To see thee more clearly
Love thee more dearly
Follow thee more nearly
Day by day
Please watch over and strengthen Par, Jonathan (at this moment as he is in surgery we pray that it would be successful and that Jonathan would be able to progress forward), Ella’s new friends, Ella’s great grandma and of course Miss Ella Renae.
Be with Daddy as he is away, keep him safe. Be with Mommy as she stands by, keep her strong.
Thank you that Josh and Tina have not grown weary and that they continue to put one foot right in front of the other and follow You.
Lord we come before you again and ask that you would heal Ella fully. Let there be no further road blocks or bumps. Help her to have smooth sailing from here on out.
We pray all of this in your mighty and powerful name….

Sweet dreams everyone!!

Love, Melissa

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