Posted (Tina) in All Posts on September-16-2008

Ella had yet another rough night. After last night, I emphasized to the doctors that we need to change the night time feeding schedule. I cannot be up every hour with Ella each night. At first, I thought maybe the tummy was just tight from her surgery and needed some stretching out. So, I tried to be strong and push through the sleepless nights. But now, I’m getting so worn out.

I think they are trying to be too aggressive with her food and weight goals. Do they realize that she is a CDH baby and has a tendency towards “failure to thrive”? In other words, these goals might be reasonable for a healthy baby that needs to catch up, but not for a fluid restricted Bun.

Tonight we are going to try a lot less food and see what happens. I’m hoping for a restful night of sleep. Since we knew we were going to run less food tonight, we increased her daily feed to 90ccs over an hour for each feed. That seemed to go well. Each time I vented her, no air would come out. There was one exception. She was doing great and all of a sudden, started retching so hard. She was having trouble catching her breath and then part of the formula came up her throat. Then, she was trying to breathe but not inhale it. She got so scared. You can just tell when she gives that loud, deep cry. It is so hard to hear those cries. They are genuine and indicate that she is really scared. Of course, all of this happened while she was having the echocardiogram completed. Clearly, the echo tech was nervous and scared at Ella’s reaction.

Overall, Ella’s heart rate is still too high. A few times, it dipped down into lower numbers when she was sleeping. But overall, her heart seems to be working much harder than it should.

When they did rounds this morning, I got a peek at the chest xray from yesterday (BUN was 14). It looked pretty good for Ella and indicates that she does not have a lot of fluid on board. And today, her BUN was 16, so the increased Captopril and Aldatazide seem to be doing their job. Yet, they discussed still fine tuning her regimen between increased Captopril and Aldatazide. We will see in the coming days.

For once, they also discussed thinking about discharge as far as trying to transition the mind set to more of the home regimen. What are we going to do with Ella at home – for feeds, meds, everything? And what do they need to do when she is in the hospital versus outpatient? We have been here 3+weeks. It will be a glorious day to go home.

We’re continuing to rely on the Lord for His timing and trying to be patient. Not just with Ella’s progression of care, but in all things. We feel like there are so many things going on in our lives and yet in the midst of the noise, He beckons for us to stop, get on our knees and hand over our lives to Him. He wants the best for us and therefore, we need to seek Him to ensure that we don’t miss out on any blessings that He has for us.

Continuing to rely on our Lord through the exhaustion. Thank God for where He has us and the progress we’ve made. Here is Ella one year ago today:

Deuteronomy 4:29-31 (The Message)
But even there, if you seek God, your God, you’ll be able to find him if you’re serious, looking for him with your whole heart and soul. When troubles come and all these awful things happen to you, in future days you will come back to God, your God, and listen obediently to what he says. God, your God, is above all a compassionate God. In the end he will not abandon you, he won’t bring you to ruin, he won’t forget the covenant with your ancestors which he swore to them.

Laura Blackwell on September 16th, 2008 at 11:33 pm #

Thoughts and prayers with you. I remember one night when my daughter was about six months and wasn’t sleeping well.(acid reflux) I was so tired when I got up to feed her that when I went to drop into the chair in her room, I completely missed the chair and threw myself onto the floor with her in my arms in the complete darkness of her room. Of course, part way into the fall, I realized that I’m falling so I only hurt myself worse by taking every inch of the impact on my own back instead of risking hurting our sweet baby. All that to say, I completely understand the URGENCY behind not being up each hour. I will not roll over tonight without thinking of you. Prayers for rest and wisdom.

The Brittain Family on September 17th, 2008 at 4:58 am #


Joel Snyder on September 17th, 2008 at 5:03 am #

Ella, I had a great time visiting you and Mom and having lunch. You looked good and I am hoping that you can go home soon. Tina I am praying that you can get some rest. I will see you today and check out you slow and steady progress. Love,Grandpa!!!!!!!!!!!

Steve and Joan Odell on September 17th, 2008 at 7:02 am #

Dear Hearts – our prayers and thoughts are with you and the medical team. Waiting for things to improve can be very taxing emotionally and physically. Praying for rest for both of you. Love, hugs and prayers – Steve and Joan

Megan on September 17th, 2008 at 7:03 am #

Goodmorning guys I know that right now somethings are going well and other things seem so stressful. Give it to the Lord. Everyone is praying for you and are supporting you. Maybe the hospital can get some volunteers to help give breaks to get some much needed sleep.

Williamsburg on September 17th, 2008 at 7:27 am #

Of all the physical “ills” in life, the hardest one for me to endure or survive is fatigue. We ache for your exhaustion and Ella’s continued discomfort in the face of progress. Whatever God’s agenda in the midst of this unimaginably difficult challenge, we continue to pray that He provides the resources you need to meet each day and that His mercies are tangibly new to you every beautiful Colorado morning. Love to you every hour. XOXOXO

sherry martinez on September 17th, 2008 at 10:18 am #

Tina Cayden and I check on your progress every day. I pray for you all to go home soon. As there is never rest in the hospital. I pray your new Drs can see the big picture and not just the one right in front of them. If you just need a friend please call Im home in my room most days with Cayden. hugs to you all sherry

The Laz Fam on September 17th, 2008 at 11:15 am #

Love you so much ~ you are in our prayers. We’re so sorry this is so hard, but we praise Him for your amazing strength and reliance. It’s obvious where Ella gets her fighting spirit! 🙂

Jennifer Harris on September 17th, 2008 at 11:17 am #

We will continue to pray for mercy, grace and Ella’s full recovery. GOD is good. Please hold on to HIS unchanging hand!
May the Peace of the Lord be with you.
~jennifer & chelsea

Kara on September 17th, 2008 at 4:45 pm #

Love you! Hope everyone gets some sleep tonight.

Post a comment

Name:  (required)
Email:  (required)