It was a relaxing weekend. We were able to catch up on some TV shows and remove all the Christmas decor in the house.

Clinically, Ella did fine. She is still not saturating as well as she has in the past weeks. It seems like she is requiring more than a liter of oxygen to stay in a good range, especially when she is awake. This isn’t something critical but it is definitely on our list of topics for the next meetings with the doctors. We need to figure out why her oxygen requirement is higher.

It doesn’t seem like the normal culprit: fluid retention. However, we increased her food 48ccs per day which has to be having some cumulative effect on Ella since she is so sensitive. And based on her weight last Friday, she should be consuming a minimum of 850ccs of formula per day. Even with the recent increase, she is only at 816ccs. So, she needs more formula but we are not sure what impact that will have on her respiratory status.

We will probably wait to see her pulmonologist on Jan 22nd before increasing the volume of food. Instead, we will likely begin to work on the density of the food toward the end of this week (making the food more calorie-rich).

Unfortunately, Ella fought us on oral feeding sessions over the past few days, letting us know that she does NOT want to eat anything orally. We know it is temporary and that she will get past this season someday. But boy, it is a tough thing to see your child resist food. And not just a little bit, but a complete meltdown! It’s hard to accept when she has a feeding tube and you know that she will not want a feeding tube for years and years. And the only way to get rid of the feeding tube is for her to eat enough nourishment orally to where the tube is not necessary. Phew, we have a long way to go!

She spent more time in her exer-saucer today. I think that is her favorite form of exercise these days!

We are clinging tightly to this promise as we start another week of work tomorrow:

1 Peter 5:7 (NLT)
Give all your worries and cares to God, for he cares about you.

…She’s pretty cute.

And she still doesn’t want to eat orally…

Her exer-saucer is fun…and who would have thought that she would love it so much that she would fall asleep! Wow!

Still not sure what to think of her numbers…

…but she’s still smiling!

Ella had a busy day with OT & PT, so she was caught resting her eyes several times today.

The PT session went well. Not much new to report on the physical progression. Just continuing to do exercises and activities throughout each day to strengthen her.

The OT visited and noted that Ella’s feeding significantly decreased (if you remember, Ella had that honeymoon period where she took a jar and a half over 2 days!). Today, she took 2 bites and then melted down as you can see below. One suggestion from the OT today was to change the environment to see if that helps (in front of mirror, in her room, etc.). They tried it today on Ella’s mat.

Just so that everyone knows, we have tried letting Ella explore on her own with foods. It is something we have tried periodically since she was real young, as the OT therapists recommended. Unfortunately, I think the “normal” response for a child to explore is not there for our girl when it comes to food. As soon as you put food out to let her explore with her fingers, she pulls her hand away. She starts to cry, in many cases. So, you might notice that many of the exercises we mention and/or pictures of the z-vibe tool are geared around sensory stimulation and working towards having her desensitize, so she realizes that it is a safe and fun thing to do.

For example, we have to use warm and cold cloths and wipe her face each day, for stimulation reasons as well as hygiene. There is a technique the OT described today where you take a soft brush and use with firm pressure in a continuous motion over the surface of her arms, back and legs. Then, you follow it with quick thunks to the spine, shoulders, elbows, wrists, knees, ankles, etc. We use the z-vibe tool in still mode as well as vibration mode throughout the day on her cheeks, mouth, hands and feet. We are told to massage her feet and hands. Lots and lots of touch and sensory stimulation. Heck, we even have to take 15 seconds of torture each morning to attempt to brush her teeth. Boy, she hates that activity!

Also, we try and highlight the high moments and smiley pictures of Ella throughout the day on the blog. But keep in mind that she retches (like dry heaving) several times throughout the day, even when she just takes a drink. With that in mind, it makes it a bit easier to sympathize with why Ella may not have a high motivation to stick things with different tastes and textures in her mouth (being intubated for months did not help either).

For Ella, eating is not as much of an instinctual activity. We have to literally teach her to do something that for most babies is completely natural. She is still trying to figure out the coordination of how to taste, swallow and breath in harmony without aspirating!

In the meantime, it is lots of work for her versus a mindless, tasty time. Ultimately, we know that this is just a season and part of the whole adventure. It’s just going to take patience and discipline from me, Josh and Kelly to get her there!

My last thought before retiring for the night:

Proverbs 21:21 (NLT)
Whoever pursues righteousness and unfailing love
will find life, righteousness, and honor.

Ella had PT today. She was a bit fussy but tolerated it and pushed through to make it a successful session.

When Kelly sat her down to feed her, Ella melted down again. She does not like the spoon or her fingers, so Kelly went back to dipping her binky in the food and she seemed to tolerate it much better (progressively, it is a step backward, but we need to take our victories where we can). And like her shirt states: Little in size, BIG in attitude!

Unfortunately, Ella was in lots of pain tonight with a bad case of diaper rash. Poor little Bun! At first, we had no idea what was happening. She seemed like she was in so much pain and she did not have a diaper rash earlier. Our minds automatically begin to think the worse with Ella – that it is something much more serious. Thankfully, it wasn’t major and Desitin exists. It is not the best smell and her butt is quite lathered, but anything to get rid of the pain she is experiencing. She has enough to deal with much less diaper rash!

As we end this day, we rest in the truth.

Micah 6:8 (NLT)
No, O people, the Lord has told you what is good,
and this is what he requires of you:
to do what is right, to love mercy,
and to walk humbly with your God.

Ella had a great day. She had a great workout with the physical therapist and even spent 11 solid minutes doing tummy time! This is huge considering she normally does about half that amount.

She also ate a fair amount of apples, albeit off of her binky instead of a spoon. This is a bit of regression, but we figure getting the food in is better than not at all.

Thanks to all of you for all the diaper rash advise. All you moms and grandmothers are so cute with your home remedies. Fortunately, this doesn’t seem to be a yeasty rash, so the Desitin has helped a lot over the last 24+ hours. We’ve been slathering her up every chance we get, and with that, her pain and the rash have pretty much gone away.

And on another positive note, Ella’s “Alma Matter” defeated the Sooners to win the BCS Championship. CONGRATULATIONS GATOR FANS! Yes, the Gator Nation has done it again and their football team is the national champions. I was not able to watch the entire game, but I picked it up early in the 3rd quarter. What an amazing EXCITING game and what a testimony given by the quarterback Tim Tebow.

Not only is he an amazing quarterback, but an incredible individual as well. The announcers talked about his parents work as missionaries and Tim’s contributions as well. You can also see that he’s not ashamed or afraid to share about his relationship with Christ. He did so by the scripture he had referenced on his EyeBlack (John 3:16) which was seen throughout the broadcast, plus giving thanks to his Savior for the game.

So we stand before Our Lord Jesus and thank him for the “game” he has us in as well. Even though times can be incredibly difficult, we do our best to seek his face, and trust him every day for peace and wisdom through the fire of life.

John 3:16
“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

…to the Doc. Yep, she went to see Dr. Perry today. I had not seen him in months since before Ella went to the hospital in early August. Josh took her on the last appointment in November. It was good to catch up with him.

It’s also good to have perspective. He was pleased with Ella’s progression. He even took note at how well she was holding her head up and how much stronger she is compared to last summer. I explained how Ella is working out each day, as witnessed above.

Ella weighed in at 8.66 kilos, up from 8.5 kilos last week. This means she is 19 – 19.1 pounds. We are confident that is good weight gain since she is acting well clinically. Dr. Perry was pleased with her recent weight gain since we increased her food and calories since Dec 11th.

We are scheduled to see the pulmonologist on Jan 22nd. He wants the pulmonologist to determine her volume of fluid intake. She is intaking 816 ccs, when she should be taking around 860 ccs. In the meantime, Dr. Perry would like me to try increasing the calories of her food to 28 k/cal. Since she is so fluid sensitive, he suggested that we give her the increase in calories right now and have the pulmonologist determine the schedule for fluid/volume increases.

Also, he asked us to wait about one more week and then to stop giving her Prevacid. We’ll see if she has any adverse affects. We really don’t anticipate any since they only started giving that to Ella right after surgery to help with some tummy discomfort she was having at the time.

Dr. Perry also mentioned that as Ella approches her 2 year birthday, speech skills are going to be important. Since Ella’s skills in this area are minimal, he wrote a script for speech therapy.

All in all, it was a good visit. He wants to see us back in mid-February, about a month from now.

This afternoon when I came to pick up Ella at home to go to the doctor, I peered out the window while Kelly changed Ella’s diaper. It was such a cute sight. You might have to look close, but there are 5 deer just hanging out in a neighbors back yard, peacefully enjoying the afternoon and view of the golf course. Ahh, the life of a deer.

Psalm 42:1
As the deer pants for streams of water,
so my soul pants for you, O God.

We’re continuing to watch Ella closely. She’s been doing pretty well with the increase in caloric density of food. Her stools were a bit runny at first over the weekend, but they seem to be getting better. This is a good sign since she really needs more calories to make up her weight deficiency.

She’s still continuing to have a tough time with taking her Captopril medicine at night. Tonight when I laid her down to sleep at 9:15pm (about 15 minutes after the dose), her heart rate was over 200! And her breathing was about 70 breaths per minute. It took extra oxygen and lots of tossing and turning for her to finally calm down. We’ll see what her stats are when she is completely asleep.

If you remember, she has always had this issue since they started giving Captopril to her in the hospital. They think it is the interaction between Captopril and Sildenafil. When we were at Children’s Hospital, they tried taking away the Sildenafil and that is when Ella was rushed to the ICU.

It is just past the 2 week mark for Ella’s bi-weekly bumex dose. We’re trying to hold off and not give her any, but are just watching closely.

It’s been a rough few days on the personal front in the West house…heavy heart for Kelly, other things for me and Josh. Just asking for prayer to help us stay focused on Him and His purposes and to not get caught in the circumstances.

We praise and thank Him for all the blessings in our lives. We lay it all down before Him and desire to be obedient.

Hebrews 4:16 (NLT)
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.