Posted (Tina) in All Posts on September-23-2008

Ella was up again all night, each hour.

The retching overnight is disconcerting. I expect to have it occur during the day sometimes and also with feeding. However, I don’t expect her to wake up from sleep by retching. This has been tough on all of us. Last night, Josh woke up around 4am and offered to take over. He took care of her till around 7am, and then I let him go back to sleep for another 1.5 hours until he went to work. Tonight, Josh is working late and he is going to go to our home and have a solid night’s sleep in our bed. We need to check on our cats. The poor felines. Every few days when we make it home to pick up mail and do laundry, the cats are so lonely. Hopefully, it won’t be too much longer before we are home.

On that note, I think there is a slim chance that it will be tomorrow. When the docs rounded this morning, I gave them the overnight report. Her heart rate is not changed – – it is still too high. Weaning the sildenafil has not changed that for Ella. Also, I made sure that they knew about Ella’s oxygenation. Her color did not look as good and her saturations are all over the place. One minute she is sitting at 100, then low 90s and if she gets upset at all, she desaturates within a second or two. She wasn’t doing that on the higher dose of sildenafil. They agreed that it might be the weaning of that medicine that is causing issue with the saturations and the cause for her dusky color since those symptoms are typical for pulmonary hypertension. To confirm the status of her pulmonary hypertension, they ordered an echo.

The echo did not get completed today which is a bummer. The cardiology team was already booked for the day. And they don’t want to make any changes to the sildenafil until they take a look at what is going on with her heart. So today went by without much changes to her medicines….bummer (makes it feel like there was not much progress). Supposedly, we are on the morning schedule for an echocardiogram.

Also, we are scheduled for labs at 8am to see what her electrolytes look like. Fortunately, since they were unable to draw labs last Wed and Thurs, they gave us a break from blood draws. This was a wise move to let Ella have a break and give her veins time to recuperate. I’m hopeful that tomorrow will go better and they can get the labs they need.

Ella took 90ccs of Peptamen Jr and 10ccs of Pedialyte each feed today. It did seem to cause her a bit of grief, so we will likely hold that density of food throughout tomorrow too. I want to push her to get up to the full strength of 100ccs, but am prepared and realize that might take a while.

The swallow study was this afternoon. It wasn’t much of a study – she only took 8 swallows. I offered her the bottle (apple juice mixed with barium). She took to the bottle, took down several swigs, stopped and started retching. She had such a bad spell of retching (sometimes it is just a few retches, but this went on for several minutes). I had to increase her oxygen to 2 liters and wait a long time to calm her down and try again. After that really bad experience, she was not about to take anything by mouth. I tried purees and by that point, she would take her hand and move mine out of the way. She was so upset.

It was a bummer because it doesn’t give them much to analyze. The good news is that out of the 8 swallows that they did view, she did not have aspiration, deep laryngeal penetration, or nasopharyngeal reflux (through the nose sinuses). However, she does have pooling at the base of her esophagus right before the tightened nissen. We think this is why she is retching so much more post-surgery.

The surgery and GI teams state that retching is normal for a redo-nissen. They anticipate that her nissen will naturally loosen in 4-6 weeks post surgery. Well, tomorrow is 3 weeks and it doesn’t seem that loose. She is retching a lot and hard; pretty much like she did before surgery. We’re hoping that her GI doc will make the time to visit us in-patient so we can discuss our concerns.

Once we were done with the swallow study, we met Grandpa and went outside for some fresh air. It is only the second time that Ella has been out of her room and experienced the sunshine.

Please pray for Ella, that the doctors will be given wisdom and discernment to figure out the best set of medicines for her. Pray for her retching and feeding therapy, that it will minimize with each passing day. Also, that she will be in a stable place soon so that we can take her home.

Please pray for us and our sanity. We only have 2.5 weeks until our move date. We have been stuck at the hospital and not able to start packing for our move. It is around the corner and we are just not sure how it will all get done. We praise Him for placing friends in our lives that are willing to help during the move, but are still stressed about how all of it will get done timely.

Finally, please lift up our new nanny, Kelly, in prayer. We are so blessed to have her come into our lives. Pray that the Lord will prepare her to take care of Ella and that she will be ready spiritually and emotionally for this extremely important task. Pray that all of us can bless each other as we live together with Ella and care for her.

One thing is for sure, amongst all the strife in her daily life, my daughter still takes the time to smile at me…and that means so much. That is what really matters and I’m so glad that she takes the time to remind me each day and keep my priorities straight.

Hebrews 10:35-36 (NLT)
So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.

Terri Trainer on September 23rd, 2008 at 10:38 pm #

My sweet friend, I read this post and feel your tension and stress…and it is justified! However, we’ve already seen what He can do and know that He’ll work out the details of the coming weeks as well. Remember that The Book tells us not to worry about tomorrow. Focus on one day at a time, and before you know it you will have walked the path He has placed in front of you and the details will have fallen into place.
I love you and am counting the days until I can hug your neck!

Kelly on September 23rd, 2008 at 10:56 pm #

Boy do I have a story for you! (this post will be long, just a warning. Sorry)
After I got off the phone with you, Tina, I got a call from an old friend. She’s not a believer; never was, never would be. We were debating about God, and I listened to her rant and rave about how the Bible was only valid 2 thousand years ago, and it means nothing to us now. God is only “Fire Insurance.” “God isn’t active in life… He may have put everything in motion but he doesn’t intervene.”
I think of Ella in that moment and how many miracles He’s performed through her and through you both. So I say, “Tell the parents of the child with a 0% chance of survival beyond birth, who now look at her smile 14 months later.” She’s quiet. “Tell that to those parents who have watched their child come within inches of death, yet who lives today and is growing and learning 14 months later.” She’s quiet. “Tell those parents who still have faith and praise God for their blessing—no matter how hard or expensive or trying it may be on them—every single day, constantly. Tell those parents… tell that 14 month old that she’s just a streak of luck.” She’s quiet. “I bet they’ll tell you you’re wrong.”
30 minutes later she was at my house asking how you can have that kind of faith. “How you can find so-called “peace” when your only child is suffering so terribly?” I tell her, “God has experience in that department. He watched his Son tortured to death and He knows what it’s like to watch a child suffer—we’re all His children. We all suffer.” She was speechless.
For the first time in her life, Hannah prayed. The first words that came out of her mouth were “God, I lift up baby Ella to you…” Yes, I’m teary eyed still. (I was a water fountain at the time.)
Talk about ministry, Tina. Wow. Nothing else I thought or wrote all day could trump that. All I can say is PRAISE HIM. You and your daughter, through His own way, brought another member into the Kingdom.
As for Ella, of course we’re all praying for her, and for you both. I wish there were more I could do from the Springs. Soon, though. Give Ella a big kiss goodnight, and big hugs and tons of love to you both.

kristin on September 23rd, 2008 at 11:22 pm #

Wow. Father God, please once again let the West family feel your strength and your tenderness. Let them sleep tonight so that they can prepare for the upcoming days. Thank you Lord for placing them in their home and for sending them Kelly. Josh, Happy Belated Bday. Next year Ella will be singing Happy Birthday to you.

Tina my sweet friend. My heart aches for you and with you. I love you very much and I pray with all my heart that you feel all the love that covers you and your family.

Ella, I’m sorry your tummy hurts and that food is so difficult for you to consume right now. You are an amazing little girl. Your smile reaches past the heavens. Your healing is happening its just not as quick as we all desire for you. But you are healing…I know because well someday I’ll tell you the story that starts out “you know when you know when you just…know.” Your mommy told me that story a long time ago and it is a very true story.

I know that all will fall into place. Do what you can…TINA…it does not have to be perfect it just has to happen 🙂

I love you,

The Brittain Family on September 24th, 2008 at 4:39 am #

happy 14 mos, ella!

Kathy on September 24th, 2008 at 5:21 am #

WOW!!! What a testimony Ella’s life already is. And that reminds me of something I heard once. You can’t have a test without a testimony!!!

Praise God from Whom ALL Blessings flow!!!

Williamsburg on September 24th, 2008 at 7:19 am #

Tina, I literally cannot imagine what it’s like for all of you to be living daily on the edge of not… _quite_… enough. Not enough sleep, or wisdom, or food for Ella, or progress, or time for the move, or any of the things that would make life easier or even bearable each day. I can’t imagine being daily at the limit of my own and others’ resources with nothing left but His grace which is “sufficient for you” in the midst of such thorns. God, we pray consistently and specifically for each and every medical, practical, spiritual and emotional need of the West family while we also praise You for the sufficiency of Your mercy, grace and provision each morning. Please be powerfully at work in Ella’s body and her life, and her parents’ lives, as well as in Your larger Body, as you have already shown yourself to be. All our love and blessings to you – don’t hesitate to call us with the slightest need. XOXOXO

John & Estela Williams on September 24th, 2008 at 7:47 am #

Wow… what a story Kelly, praise the LORD. I can’t wait to meet you, I am their old neighbor and will soon be their NEIGHBOR again. We are excited and can’t wait to have you 4 back home in SE Aurora. Love The Williams

Grandma on September 24th, 2008 at 9:00 am #

OK Dear Kelly
That story wiped me out Grandma West is crying like a baby. I am so happy you have come to help the kids and can hardly wait to meet you. Baby Ella I am praying for you ,and Mom and Dad constantly Thank you Lord for all your blessings .Love G West

Jennifer Harris on September 24th, 2008 at 9:59 am #

We know that GOD WILL heal baby Ella. The prayers, trust and faith of all families and friends that her little body will totally heal WILL happen. HE will show everyone the power of HIS grace and mercy. Please stay strong and continue to PRAISE GOD for the blessing that HE WILL reveal to us.
jennifer & chelsea

Megan on September 24th, 2008 at 10:22 am #

Ella’s smile is a good reminder to us all. To have patience, to remember that God is with us, and that we should find all the good throughout the way. I really hope things can get back on track for everyone!

Joel Snyder on September 24th, 2008 at 5:19 pm #

Ella, Thanks for a great visit with you and Mom. I am praying for the answers to your current problems and maybe the Echo will have some clues. I will check on you later. Love,Grandpa!!!!!!!!!!!

Fran on September 25th, 2008 at 9:43 am #

Megan writes better than I do so I will ditto what she says. I can’t even begin to know what it feels like to walk in your shoes. And surely I could not smile like Ella has throughout her journey!
Terri, I am glad to hear you are coming to help…you are both so much alike in that respect you will know how Tina wants things to go in the move! Love to all, Fran

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