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.

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!

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.”

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.

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

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!

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.

Posted (Tina) in All Posts on February-11-2009

Just another normal day for Ella, with OT and PT sessions.

We heard back from her pulmonologist. As far as her upper GI study, he doesn’t think that there is anything we can do to reduce her retching. Surgically dilating her nissen might make the contents empty from her esophagus into her belly faster, but it also might compromise the strength of the nissen. Since it is an invasive procedure and her nissen has already herniated once, it does not look like there are any immediate remedies.

The increased retching since this past surgery does seem to be tied to the nissen being tighter and therefore fluid is emptying slower. When she drinks a lot and it takes longer to empty into her belly, it starts to build up higher and higher in her esophagus. Then, the reflexes in her esophagus kick-in and she retches. Right now, she has such a hard time coordinating the suck, swallow, breath activity that when we try to pull the bottle from her mouth to limit the volume, it throws her rhythm off and she ends up retching. So, we let her dictate the volume and simply try to help by always making sure she is upright. Plus as she ages, she can learn to control her retching by not swallowing as much liquid all at once and just taking a few sips at a time.

Unfortunately, her nephrocalcinosis (calcium build-up on her kidneys from use of diuretics) has not improved. It hasn’t worsened, but it also has not gotten better. We had expected that it would improve over the past 4 months since she has been on a daily regimen of a non-loop diuretic. We will likely have to wait until our next appointment to get the doctor’s thoughts on what we should do long term.

And if we can get a miracle on Feb 25th with the SVC procedure and the stint, maybe Ella would not need to use diuretics as often. This would definitely help the nephrocalcinosis build-up on her kidneys. We’re holding out for a miracle.

Thanks for all the support and prayers.

Job 5:8-9 (NLT)
If I were you, I would go to God
and present my case to him.
He does great things too marvelous to understand.
He performs countless miracles.

Posted (Tina) in All Posts on February-10-2009

Ella had another rough morning, but got better by the afternoon.

Her OT session and eating sessions went pretty well. She was more tolerant the first eating session and seemed to take a liking to a couple of new flavors today: apples & apricots and peas & brown rice. Although, she apparently is not fond of garden vegetables. Well, her Mom isn’t either. So, there you go! As Kelly put it, it smelled like they forgot the vegetables and just put in the garden…like the dirt.

The PT session went well too. She is really starting to enjoy her “play time”. That is the key: getting her to do exercise and think she is just hanging out and playing. I walked in on the session and she was smiling! It was very cute.

One reason that she might have been cranky yesterday: one of her teeth on the top has broken through her gums! She has several that seem like they are going to emerge any day, but one has actually surfaced.

As I type this, I’m a little shaken up. We just noticed emergency vehicles pulling up to our neighbor’s home. Our hearts sank and we started praying. Once we could tell that someone was placed in the ambulance, Josh walked over real quick to see if there was anything we could do for them. It was our neighbor’s mom who suddenly became ill. Please lift her up in prayer – that the Lord would heal her and bring peace to the family.

We praise Him and thank Him for the many blessings, including our health. And although Ella has her challenges, it has been nearly 4 months since we have been hospitalized. We’re very thankful.

Colossians 2:7 (NLT)
Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.

Posted (Tina) in All Posts on February-9-2009

Ella was wired again till 11pm last night. Finally when she went down, her numbers looked good.

The scale this morning showed more weight loss – 9.06 kilos. It will be interesting to see what it is on Friday, which is the day we use to track her weekly weight gain. Although it is slight weight loss, it is better than significant weight gain.

Once Ella woke up this morning, she was fussy. I’m not sure if it is the overall teething getting to her, but you could just tell that she did not feel that great. The OT came to try and work on her feeding skills. Once Kelly put her in the chair, Ella let her know that there was not going to be any of that noise. Her lungs are definitely getting stronger – she was screaming loud! As we already know, Ella definitely runs the show, so the therapy session was cut short.

As long as she did not have to “work” today, Ella seemed fine. But as soon as you made any move that she didn’t want, even to change a diaper, she let you know.

We’re hoping that she is in a better mood for tomorrow since she has PT and OT sessions. Beauty sleep can cure many ailments and so we’re hoping that it does that for her tonight. Either way though, we love our princess, cranky and all.

1 John 5:14 (NLT)
And we are confident that he hears us whenever we ask for anything that pleases him.