Feb
12
    
Posted (Tina) in All Posts on February-12-2009

An attitude is a hypothetical construct that represents an individual’s degree of like or dislike for an item. Ella had lots of attitude today.

She enjoyed her PT session – she is getting so close to sitting up on her own! Right now, she still requires a bit of support, but she is getting so much stronger!

The feeding sessions did not go great today. She just kept turning her head away from the spoon as if to say that she did not want any more! Just showin’ the attitude towards Kelly!

Tonight, we had to take a car ride to pick up Josh. It was the first time that Ella got to ride in her new car seat, facing forward from the back seat. She enjoyed being able to look out the windows. And even though it was dark, the stimulation and excitement of something new kept her content. I think it also helped to have the baby tunes playing through the CD player.

We’re all tired tonight and going to try and retire early. Praying that Ella will sleep…she has been getting up several times per night the past several nights.

Praising Him for our baby girl, sleeplessness and all.

Jeremiah 29:13 (NLT)
If you look for me wholeheartedly, you will find me.



 
Feb
13
    
Posted (Tina) in All Posts on February-13-2009

Ella did not sleep again last night. The last night of solid sleep was back at the end of January when I went away to Dallas. I wish we could figure out why she is not sleeping solid. It is exhausting to not sleep well at night.

Besides Mom, Ella had a pretty good day. She enjoyed her PT session and tolerated her feeding sessions with Kelly quite well. She never seems to enjoy eating and we have to play videos to distract her, but at least she was not having a complete meltdown.

We started to notice this past week that Ella was not gaining weight. That is always a challenge to balance her weight gain with any potential fluid issues. So 2 nights ago, I tried increasing her food to 28 k/cal to see if she could handle a more calorie dense formula. The good news is that she seems to have tolerated it. This is important since we always get concerned about giving more volume. Hopefully, the extra calories in the formula will help her continue to gain weight.

As of this morning, she was up to 9.24 kilos. This is about the same as last Friday although she did dip down to as low as 9.06 kilos a few days ago.

Also, we will be watching closely because on Monday, it has been 2 weeks since she had her last dose of Bumex. We’ll be watching her for sudden weight gain, oxygenation status and heart rate to determine if she needs further diuresis. Since the nephrocalcinosis has not improved, we’d like to stay away from Bumex as much as possible.

Looking forward to a 3 day weekend, since it is Valentines Day tomorrow plus Daddy has President’s Day off!



 
Feb
14
    
Posted (jooosh) in All Posts on February-14-2009


 
Feb
15
    
Posted (Tina) in All Posts on February-15-2009

It was a lazy Sunday, but it was sunny and 50 degrees outside. We felt like we needed to get out of the house and do something. Obviously, our options are quite limited. So, we decided to take a drive in the mountains as a family.

It was nice to take in the mountain scenery and enjoy some fresh air. Plus, it was fun watching Ella. She is really enjoying her new car seat and the fact that she can face forward! There is so much to look at – – – and it is so different than anything she sees in her house each day. It is quite the adventure for her…something basic and simple but stimulating for Ella and relaxing for her parents.

Speaking of stimulation, I wanted to answer one of the questions posted about Ella’s extra bathtub in her bedroom. The bathtub is filled with uncooked pinto beans. Her occupational therapist places her in the tub with the beans to work on her tactile stimulation.

Other than our drive, it was just another Sunday. Looking forward to taking many more drives with the Bun in the coming days.



 
Feb
16
    
Posted (jooosh) in All Posts on February-16-2009

Ella has been really cranky the last few days. While Tina’s been nursing a badly sprained ankle, I’ve been on Ella watch during the night which has made me a bit of a cranky bear too. The last couple nights, Ella was up almost every hour after 2am. Most of the time, it’s just a request for her binky and frog. Sometimes it’s for a drink. Other times, it’s because she’s pulled her cannulas out.

I do think we have some rationale for her insomnia the last few months which really started after her last hospitalization. Through some online research, it’s our thought that one of her meds could be contributing to her restlessness. We’ve identified her increased coughing as a side effect of Captropil which may also be keeping her awake. This is not something we can modify at this time though due to the positive impact this med is having on her heart and the rest of her pulmonary system. Hopefully the procedure on the 25th will be successful and will reduce the needs for this kind of medication. We’ll just have to see though.

She did gain weight rapidly over the past 5 days, 9.06 kilos to 9.42 kilos. Plus, today has been 2 weeks since we gave her a dose of Bumex. So like clock-work, we gave her a dose of Bumex at noon to see if we could get some of the fluid off. We’ll have to watch her weight over the next few days.

With me having Presidents day off, I was able to escape with Tina for some one-on-one time for a good few hours this afternoon. We enjoyed lunch together and people watching at Wash Park. What a gorgeous day.

Thank God for our baby girl, even though she’s been quite a cranky butt.

“There is no Ella, there is only Zuul.”


 
Feb
17
    
Posted (Tina) in All Posts on February-17-2009

Most babies can sit up by seven to nine months. Sitting up requires a good sense of balance, as well as muscle strength and control in the trunk and hips. When babies are very slow to sit, it is usually due to immaturity in one of these systems. The developmental abilities needed to sit steadily are also required for standing and walking, so late sitting usually goes with late walking.

For five minutes today, propped in just the right position, Ella sat up on her own without support. We can’t throw her any curve balls and she can easily lose her balance at this stage, but she actually sat there on her own!!! This is a huge milestone for Ella.

Her weight was down to 9.36 kilos which is a sign that the Bumex worked. But I was up with her 15 times between 12 midnight and 7am. This did not help her disposition today – she was cranky. Especially when Kelly would try to have her eat, Ella rebelled with screams of displeasure. I was upstairs behind closed doors and could hear Ella belting it out! One note from the OT: Ella’s lung capacity has grown even since she started seeing her as a patient. I guess that is the silver lining.

Ella tried baby yogurt today for the first time. She didn’t mind the taste because we tried it on the binky first and she seemed to enjoy the flavor and it increased her sucking behavior. As soon as we put yogurt on the spoon and tried to come near her mouth, she let us know that she was not interested in eating. Hopefully, our daughter’s stubborn approach will pay off for her in some respects as she ages.

Ella worked herself up several times today with profuse sweating and crying. I’m hoping this will lead to a more sleep-filled night in Denver. But either way, we hit a huge milestone that should not go without notice: she sat up on her own!



 
Feb
18
    
Posted (Tina) in All Posts on February-18-2009

One of the factors this past week that might be causing discomfort was the change in food. We increased her EleCare formula to 28 k/cal. We tried this before a few weeks back and it did not work. But there were other variables at the time that had changed, so it was tough to pinpoint that it was the change in formula density.

Early last week, she started losing weight and not gaining. We can’t change or increase her fluid status without permission from her pulmonologist. And at our January appointment, he wanted to try the 28 k/cal formula rather than increasing the volume. This is always a challenge – to manage her fluid status and make sure she is continually gaining weight. So when she stopped gaining weight last week, I thought we would try the 28 k/cal again.

It usually takes a few days for her to show signs. Now, it has been a week and we are noticing the same signs as we did a few weeks back: increased gas, loose stools, fussiness and lack of sleep. So in the middle of the day, we mixed her formula back to 26 k/cal. We’re hoping that is the answer.

From a OT standpoint, we’ve also tried some new foods, a few during each session throughout the day, that could be causing Ella some tummy grief too. And the past few days, Ella has made it very clear that she does not want to eat. Again, it could simply be her overall tummy discomfort from the 28 k/cal formula. But just to be safe, we are going to regress a bit and go back to basics on the eating too. One food per session and if it is new, try it solo for a few sessions to make sure it is not causing Ella any tummy grief.

Ella was up even more last night. I lost count. All I know is that it seemed like every 20-30 minutes and you could tell that she was clearly not happy and uncomfortable. We’re hoping for a more restful night at the West household.

On another note, a dear friend emailed and shared that her husband had passed recently from a freak accident. I can’t imagine the grief that she is enduring and yet, she was still able to encourage me: “Remember that God is teaching you patience every day, in every way. That is, of course, amongst the other lessons that you are introduced to daily.” It certainly put my daily challenges into perspective.

James 5:11 (NIV)
As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.



 
Feb
19
    
Posted (Tina) in All Posts on February-19-2009

Yes, the dense food was the culprit: it was making things over-the-top horrible for Ella. Thanks goodness we figured that out! Ella still woke up throughout the night, but maybe only 10 times versus 15-20. Plus, when she decided to finally get up this morning, she flashed me a smile.

She is still whining a lot throughout the day, but did sit up on her own for 12 whole minutes. We are all convinced that the constant whining is due to teething. The top 4 teeth are working their way through her gums: only one has been successful right now. She always has her hands in her mouth and is drooling a lot.

Our big excitement for the day was going to visit Dr. Perry, her pediatrician. We caught up on everything that has happened with her since early January. He thought she looked great. Ella sat up on the exam table on her own for a few minutes to show Dr. Perry her latest sitting up trick she’s learned. She was smiling and seemed more interactive than he remembers ever seeing her; that made him happy.

Dr. Perry was able to take care of some g-tube maintenance that Ella needed (burning off the granulation tissue). Ella was in a great mood until he went to examine her mouth and take a look at her teeth. She had a major meltdown and then proceeded with her normal whining that she has been doing. He confirmed that it is likely her teeth. Fortunately, he had a sample of Children’s Motrin and told me that it might be more effective than Tylenol (Tylenol didn’t seem to make a difference for her). So, we are going to try it tonight and see if she sleeps better. He also mentioned that after tonight we will have to cease until after her SVC procedure since ibuprofen can thin the blood. He also asked that we keep him updated on the SVC procedure next week and how she does.

Aside from that, he had 3 recommendations: he thinks that we should ask the pulmonologist again about discontinuing the Prevacid as well as her inhaled Flovent treatment. He agreed that her chronic cough is probably tied to the Captopril and isn’t convinced that either one of those meds is gaining her much. Finally, he recommended that we ask the pulmonologist about a fluid increase in her food since she is not gaining weight any more and cannot tolerate the 28 k/cal formula. We plan on going back to see Dr. Perry towards the end of March.

Ella’s other new trick this week: grab her oxygen cord, pinch it off and place it in her mouth like a teething toy!

And last but not least, we want to rejoice with the Bassett family. This family traveled all the way from Dallas to give their baby girl, Olivia, the best chance at life under the care of Dr. David Kays at Shands at the University of Florida. Her case of CDH was severe, but after 3 months in the NICU, she is being released to go home tomorrow!!! We’re so happy for them and wish them the best as they make their way back to Dallas and continue their life with the twins!

Part of my devotion this morning urges us to pray in this regard:

God, despite my circumstances, I will find reasons to praise You.

God, even when I feel disappointed by what life brings, I will trust You to bring good out of bad.

God, no matter what, I will hold on to You and Your truths.

God, my deepest desire is for more of You in me. And if that is the desire of my heart, I will never be disillusioned.



 
Feb
20
    
Posted (Tina) in All Posts on February-20-2009

I did not get a chance to talk to Kelly before she headed off for her Friday night plans, so I’m not really sure how Ella did today. From the above pictures, it looks like she enjoyed her physical therapy session.

It was much better last night with Motrin. It is our new friend. Ella only woke up 3 times. That is a miracle and something we do not experience often, so I actually got a decent night’s rest. Unfortunately, we cannot give Motrin over the next several nights because of her upcoming surgical procedure, so we will have to just hope for the best.

I was home this morning when Ella received her monthly synagis shot. She cried really hard and it made me sad for her. She has been poked SO many times in her short little life. But we’re thankful that the insurance covers this very critical injection (a $2,000 shot that Ella takes for 6 months out of the year to prevent Respiratory Syncytial Virus).

We’re looking forward to a low-key weekend. Thanks for all the love and support.

Joy is love exalted; peace is love in repose; patience is love enduring; gentleness is love in society; goodness is love in action; faith is love on the battlefield; meekness is love in school; and self-control is love in training.
— D.L. Moody



 
Feb
21
    
Posted (jooosh) in All Posts on February-21-2009