Posted (Tina) in All Posts on February-5-2008

Today was much better for Ella.

Dr. Kays came by early this morning to check on her. I explained that the food switch has been tolerated well. We started the new food last night with the 9pm feed. By this morning, I realized that the Alimentum comes at a standard of 20 calories.

Since Ella is fluid restricted, she needs to have more calories. Dr. Kays had completely forgotten and was glad I mentioned this to him. He wrote a new order and as of 6pm tonight, her feeds have been adjusted to 28 calories.

I hope that the denser food will not cause any problems. Along with no tummy pains or fussiness related to food, she has stooled twice today. Finally, I have not had to administer any gas medicine with this new food. The next couple of days will truly let us know, however the initial signs are good.

The labs were drawn this morning. Poor Ella was in a deep sleep and the tech woke her up with bright lights and a needle in her arm. I did not see Dr. Kays for the rest of the day, but I am sure he will be around tomorrow to discuss the results. My curiosity got the best of me and I asked the nurse to look in the computer. It looks like her BUN is 17, which is an improvement from 12 nearly one week ago. But if I remember a prior discussion from Dr. Kays, he would like to see a BUN of 20 or greater before letting her go home.

I think that she may be at a point where more and more of the fluid is coming off of her. Even tonight, her face looked way less puffy. The mystery in all of this is how to keep her fluid issue under control, especially when we go home.

In the mid-morning, Ella enjoyed her ride down the hall in her bed and into the elevator down to Ultrasound. She tolerated it real well and the nurse practitioner from neurology came by this afternoon to discuss. She charted Ella’s head circumference since birth and all is within normal range. Also, she compared the ultrasound to the results of the MRI in December and noted that she has not seen a change. If you remember, they were consulted to see if Ella had to much pressure on her brain from fluid retention (hydrocephalus). At least we got the information today that indicates that there is nothing to be concerned with at this point.

Since I did not see Dr. Kays the rest of the day, her g-tube was not replaced. As long as it is replaced before we leave the hospital, I am satisfied.

Ella had four friends from the NICU come and visit her bedside today. That was great for me, so I could run for coffee and take a shower. Plus, Ella was feeling better and was flashing the grins. I think that is therapeutic to her NICU friends. Plus that smile is part of what makes Ella so charming. It was nice to see her feeling better.

Ella was up for a total of approximately 3-3.5 hours the entire day. Last night, there was another baby in the shared space that was quite noisy until 5am. Then, the room was not replaced with another patient until 2pm. Since Ella was still catching up on her beauty sleep, we had a nice stretch where we both caught up on our zzzzzs in the middle of the day. Seriously, Ella slept so much today. I think she is catching up from the prior days where she slept in short little spurts in between pain and crying episodes.

While Ella was sleeping today, her heart rate and saturations looked so much better (heart rate got down to 120-135 and saturations at 100). I have not seen that low of a heart rate since the NICU. Maybe the increased sildenifil is making a difference. Her breathing is looking less labored and she is starting to act like herself. She did have a few moments where she required a boost in oxygen, but they were short and she was able to recover pretty quickly.

Please continue to pray for me, Josh and Ella. We would love to see her continue to dry out, find a food that works for her and go home! Also, please pray for wisdom and discernment for Dr. Kays, as he is going to make decisions on her care over the next couple of days.

Thanks for all the thoughts and prayer support. Although the day provided challenges, it was much better and I felt covered in prayer by all of you.

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

Adrienne - Melissa's sister on February 6th, 2008 at 2:43 am #

Glad to see that Grampa is getting in his hugs! She looks so contented too…. what a sweetie.

The Lizotte Family on February 6th, 2008 at 5:16 am #

Progress is so nice! I’m so happy to hear these good news. Prayers for all of you.

Michelle Herman Skeels on February 6th, 2008 at 6:27 am #

Tina and Josh – wow~ I couldn’t sleep so I have been up since 4am catching up on your blog…read from Christmas till today. I am just amazed at everything you all have gone through…. and yet you both still keep your sense of humor! I’ve gone through half a box of kleenex with tears of sadness and joy… just when it seem so sad, up pops the cutest photo that just warms my heart! Your baby girl is so lucky to have the two of you as parents taking her through this sensitive time. Hang in there, try and get some rest and take care of each other – Ella can’t do this without you. Michelle

Kristen on February 6th, 2008 at 7:25 am #

Never knew the ending of the prayer. Wow! Yes, come Lord Jesus, help us to endure with the end goal in clear sight! Blessings to both sleepy, sleeping beauties!

Anne on February 6th, 2008 at 8:04 am #

Wow — Ella looks so much happier today! How wonderful for all of you! (and what a great shot of her sleeping on Grampa’s shoulder!)

Char and Jim Jordan on February 6th, 2008 at 9:10 am #

Thank you for the breakthrough for Ella. We are so thankful that things did not spiral downwards as we watched this baby struggle. We are so grateful for Tina,Josh and her grandpa and their efforts to give her aid. Lord, please bless this family with the knowledge that you are pleased with their efforts and comfort them in this hour of need. We still have incident of pain and fluid retention which needs to be solved. Please give Dr. Kays or Ella’s parents guidance into this difficult issue. In the name of Jesus Christ, Amen!

Avery Kronz on February 6th, 2008 at 11:53 am #

She looks so cute with her Grandpa! She looks so happy! lots of love, Avery Kronz

Joan and Steve Odell on February 6th, 2008 at 11:59 am #

Hello West Family – Have caught up on all the news. Thoughts and prayers have been with you all during the past days. Praying today continues to show improvement and that she can go home again. Grandpa and Ella’s pictures are very cute! Lord Bless and hugs – Steve and Joan

Jennifer S on February 6th, 2008 at 12:54 pm #

I’ve done a lot of reading over the last 2 days but am now finally caught up to real time with Ella’s story. Reading your blog from the beginning was kind of like watching the story on on TiVo or something. Thank you for sharing your heart so freely with those around you. I can see that God has blessed your desire to honor him in all of your decisions about Ella’s care. I will continue to pray for all of you and am adding your blog to my reader so I don’t miss anything!

John & Estela on February 6th, 2008 at 7:11 pm #

So happy to hear that the Bun is doing so well. How awesome. Grandpa looks so natural holding Ella… how beautiful pictures. God Bless

Gloria & Red Jacobsen on February 6th, 2008 at 7:19 pm #


Amy Sabatino on February 6th, 2008 at 8:36 pm #

I put a comment on Roger’s care page to pray for ella also. I pray that ella will do well in the next couple of days. Roger is going to have surgery tomarrow please continue to pray for him. amy

Laura Marold on February 6th, 2008 at 9:06 pm #

One of my favorite prayers! I say this one often to soothe myself and keep myself on track. This prayer helps so much during difficult times. Good choice considering all that has happened lately. Praying for you Tina, for strenghth. Love, Laura M.

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