…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.

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 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.

…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!

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.

Ella did not sleep well last night. Maybe she wanted to wake up to celebrate the new year.

Her heart rate seemed to go lower last night, closer to her baseline. However, she is still not saturating real well and is requiring more oxygen. At this point, we’ve determined that it is probably not fluid. But we are not sure what it could be. I noticed this morning that her nose was extra stuffy but seemed to get better and minimize as the day continued. Also, she does seem to be retching a lot throughout the day.

I think that is the frustrating part. We can tell that she is not great, but cannot determine the culprit. Nothing is real clear, except that we know something is off.

It was a low key day hanging around the house. We tried feeding pears today. She tolerated a few bites and then decided that she was done with her oral workout. We’ll keep trying more.

We are having her sit up more throughout the day. Her endurance has gotten much greater over the past few months. Whether it is sitting in her chair, on our lap, or in her exer-saucer, it is good to have her out of the crib more often. You can tell that she is anxious to get moving one of these days. She wants to roam, but her physical limitations don’t allow her to get there. Maybe 2009 will have the first crawl or step.

We’re hopeful for a good year in 2009. Our heart’s desire is that Ella continues to grow strong and get healthier. We would love to stay away from the hospital this year. The goal is for her to gain weight and get stronger without acquiring any illnesses and that she can outgrow some of her current issues. Above all else, we’re just thankful for where He has us today. Last year on New Year’s Eve, we were still hanging out in the NICU in Florida!

What a difference a year can make. We are looking forward to reflecting next year at this time!

Happy New Year to you and yours from Josh, Tina and Ella Renae “The Bun” West!

Well, the Bun still didn’t look good by this morning according to her numbers. So in-between meetings at work, I paged the pulmonologist. He wants to make sure that it is not something else that is causing the lower saturation, increased heart rate and moodiness. After talking, he agreed to give her one more dose of Bumex. Afterwards, she had a huge diaper and that was it. So, maybe we have dried her out now.

But when we put her to bed tonight, her numbers still didn’t look great. We’ll see once she is really fast asleep. If she gets worse over the coming days, the pulmonologist asked that we call back. He wants to make sure that it is not some other sort of illness that is causing these symptoms.

Yep, Ella was going at it in the exer-saucer again today. She also had physical therapy today as well. The notes from the therapist indicated that she is rolling from her belly to her back on a consistent basis. Ella still needs to gain upper body strength, so the PT asked that we continue to make Ella reach mid-line for toys and grab for things when we are holding her to build her shoulder/torso strength. Also, she requested that Kelly give her several sessions of tummy time throughout the day. Right now, Ella only tolerates 3-4 minutes at a time.

And of course, we are still working on oral foods. Looks like sweet potatoes to me!

We’re just thankful for where Ella is at today…we are not at the hospital. We have a wonderful doctor that we can call and try to manage her care from home. I can’t imagine if we had to take her to the doctor every time she showed symptoms. We would be having doctor visits 2-4 times per month. That would be a drag…and living at the hospital is a drag.

So although she is not doing as good today as other days, we praise Him for where He has her and continue to pray for her increased strength and health.

Ella had a tough time going to sleep last night. It was 10:30pm and she was hyper. Kicking her legs and making noise. Wow. It literally took 30 minutes of calming and rocking to convince her that sleep was a good idea.

Once she fell asleep, her numbers were still not as good as we would have liked. Sometimes it is hard to tell when she first goes to sleep, so I asked Josh to look when he woke up early this morning. Unfortunately, still a bit on the sketchy side. We thought we would ask Kelly to watch her clinically today.

Kelly reported that she tolerated the food as the day progressed and went into the later sessions. They tried a bit of apples with some sweet potatoes. Hopefully, her progression will continue to move in the right direction. I know that the Christmas break was not a great time of feeding progression. She has an OT appointment tomorrow, so hopefully the OT can continue to bring more perspective.

Overall, Ella had a pretty good day. Her and Kelly had fun using all the new toys that Santa brought her. Also, Ella was sporting a new outfit from Grandma Eusey with a new headband from Grandma West. Pretty sassy looking in her Elmo attire! And she did not mind spending time in her exer-saucer. The first time was for 45 mins to an hour. The second and third time was for another hour. Lots of time sitting up today! Good job Bun!

When Ella went to sleep tonight, it was the same type of “red flag”. She was on 1 liter of oxygen saturating 93-94 which is okay, but not where she normally would be on 1 liter. Heck, we’ve even been able to wean her to 750ccs when she is asleep and doing better.

That likely means that she probably has more fluid on board. It’s tough to know for sure, but that is what we are leaning towards. This means that we will probably have to call Dr. Abman tomorrow to see if he wants to give her more Bumex.

As we drift off to bed tonight, we’re just so thankful for Ella.

Thank you Lord for blessing us with the Bun.