Ella got her monthly synagis shot today from the home nurse. She melted down real good and required about an hour of beauty sleep to recover.

Then later when the PT showed up, it took Ella a bit of time to warm up. I think she assumed that she was going to get poked again. Poor little girl. Once she got past her fear, she had a good time with the PT session. She did so well that she leaned over the boppy and did not require any hands to hold her in place – she was using her own balance!

Also, Ella decided that she was okay eating baby food today. She ate nearly a jar this afternoon. I’m not sure what convinced her that she liked it today and has hated the spoon near her mouth every other day, but we’ll take it!

We’re looking forward to our pulmonology appointment tomorrow with Dr. Lysinger and Dr. Abman. We want to discuss her current medicine regimen, the possibility of getting another upper GI (since she is retching so much) and the thoughts/next steps on having the procedure completed to open her superior vena cava in the heart catheter lab.

We’re praying for wisdom and guidance…that He will make His will evident to us.

“This is so hard. It’s just sooo hard.”

Above is the mantra I have been uttering to Tina for the last few weeks. She may even indicate that I’ve been saying it longer. I want to capture, on video, one of of the moments where Ella was retching real bad so you could see just how difficult it is to watch. It is hard to watch….so hard to watch.

I want Ella to be better….now. Enough with the patience, I want her better NOW. Fine, I’ll even trade. Make me sick. Let me be the one who retches all day. Let me be the one who chokes so hard on my own saliva and secretions that I start to pass out. Why have her go through so much of this? Hasn’t she been through enough?

There have been days where a wave of depression will just wash over me. I stare at the storm around me, and I’m just overwhelmed. The waves are HUGE, the lighting and thunder are INTENSE, and I ask myself how I’m going to make it through.

And then…
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perspective.

This is the face of a child who has gone through multiple surgeries and procedures. She has endured countless shots, blood draws, pokes and prods. This face…this child…perspective.

She has such an amazing spirit. She is such an incredible fighter. She had to be, or she wouldn’t be here….perspective.

But even greater perspective was found this morning. Tina and I started our day by listening to a sermon by Charles Stanley. We listened to him almost every day while we were in Florida, and the Lord worked through him to minister to our hearts so many times.

The sermon we listened to was titled: The Message in the Storm

I knew it was going to hit me when Dr. Stanley started out with the following introduction:

God teaches us to rivet our attention upon him, he teaches us to glue our focus on him, he teaches us to set our gaze upon him in stormy times, probably, in a more effective way than any other times in our life. Because listen, when the storm is so dark, and the winds are so fierce, and the waves are so high, and the waters so deep, and the boat is about to turn over, the only thing we have IS God.

That needs to be my focus. I know that when my eyes are fixed on God, his perfect peace is realized. I encountered this so many times when we were in Florida. Especially during the darkest times.

My hearts desire is to be obedient to him, trust in him, and be patient in HIS timing. The storm swirling around me can be incredibly distracting, but the more I look to him, the less I look at the storm.

Father, I surrender my heart to you. Let me keep my eyes fixed on you during these difficult times. May your hand continue to be on Ella’s life and may she be a testimony of your love and power to all who come to know her. In your Holy Name…amen.

If you’re going through a difficult time in your life, and you have a personal relationship with Christ, I would encourage you to listen to this message. It’s about 20 minutes long. You can download the MP3, or use the player below.

[mp3]/music/message_in_the_storm.mp3[/mp3]

Oh…and how was Ella today? She had a great day. She had a good PT and OT session and her clinical behavior overall was just positive. I’ll let the pictures below do the rest of the talking. I’ve already done enough of that myself. 😉

Ella has been a bit fussy on and off, likely teething. Last night, she still woke up several times coughing and requiring something to drink.

It has been tough for the last several months to not get sleep each night. Honestly, I always thought that it was temporary, that we would get past it. But she has been this way for months, week after week. It is tough to deal with many life situations without sleep.

I’ve been praying all week about the next steps for Ella…

If you look back to why Ella has a fluid issue, it all started when Dr. Kays removed her ECMO cannulas. It caused her Superior Vena Cava (SVC) to collapse and completely occlude, resulting in SVC Syndrome. They tried ballooning the vein right after it occurred, but the procedure was not successful. The chylothorax (build up of lymphatic fluid around the lung) was most likely a complication of the SVC syndrome. When major blood vessels near the heart have blood clots, it can also restrict the flow of lymphatic fluid because much of the lymphatic fluid eventually drains into the large blood vessels. The backup of lymphatic fluid then causes chylothorax.

So we spent weeks and weeks in the NICU trying to resolve the chylothorax. Eventually with time, Ella’s body compensated by building a network of collateral veins to carry the lymphatic fluid throughout her body. When Ella went to the heart catheter lab at the Children’s Hospital in Denver last October, they verified that her SVC is completely occluded and noted the network of veins that she has developed. If you look at Ella’s chest, you can see the freeway of veins running around. And although her body has compensated, it is not an efficient system. This is why she still requires so much diuretic to minimize her fluids.

Trying to open her SVC was an option presented to us back in October, but after lots of thought and prayer, we opted to hold off. Along with Dr. Abman (her pulmonologist), we learned that her left ventricle is more narrow and that Captopril is an effective medicine for Ella’s heart. Captopril helps to make diuretics more effective, so we were able to switch to Aldactazide, which is a thiazide-diuretic versus Bumex which is a loop diuretic. This was an important discovery because the loop diuretics were causing damage to her kidneys. Loop diuretics also carry a higher incidence of hearing loss.

When we left the hospital in October, we were hopeful that Captopril and Aldaztazide would be the combo that would keep her fluid issues in check. We wanted to try to manage her fluids with medicines and not take unnecessary risk with another procedure.

Over the past few months, we’ve discovered that these 2 medicines together are not the perfect combo – she still needs Bumex to stay dry. Thankfully, she no longer requires mega doses of Bumex every day, but just a strong dose once every 2 weeks. Just this past week, we started to require a higher dosage of Bumex plus in a shorter time frame than 2 weeks. Also, the effect of Bumex has diminished – it used to put her in a good place fairly quickly. Yet, she had a larger dose the past few days and we still had to take her to the ER because she was requiring 2 liters of oxygen!

At this point, none of the doctors have a good, long term solution. All of them are hopeful that she will simply out grow the fluid issue. As I have been seeking God and His will this week, I am feeling prompted that maybe Ella needs to have the procedure done to see if they can open up her SVC.

As I was researching this morning, I found an excellent article on SVC syndrome that was published by the University of Boston. It highlighted that as ECMO and other methods of saving babies are becoming more common, they are seeing more SVC syndrome in the pediatric population. Approximately, 10% of all ECMO babies get some form of SVC syndrome (either partial occlusion or complete occlusion of the vein). They recommend ballooning the vein or if not successful, then placing a stent. The outcomes have been favorable with no morbidity associated. The only downside is that re-intervention is highest in those that have this procedure done under 5 years of age.

The past months have been so hard emotionally. We have several issues with Ella that do not seem to be improving much. The fluid issue is one. Another concern we are praying about is a follow-up GI study. Ella is retching just as hard and frequently as when she re-herniated and needed surgery last summer. It has been 4 months since surgery and it has not improved. Retching has to be one of the worst things to watch your child endure, multiple times per day.

As we contact surgeons and specialists this week, please join us in praying for the best choices for Ella to be made evident. We certainly do not want to have her undergo any unnecessary procedures, but are feeling prompted that we need to try something else to see if we can improve her health situation.

Galatians 5:25 (NLT)
Since we are living by the Spirit, let us follow the Spirit’s leading in every part of our lives.

Yup…that’s right. We made a trip to the ER today.

As you’ve seen over the last few days, Ella has not been doing so hot. She’s been extra fussy, inconsolable, and not sleeping well at night.

We had thought the trend was related to something other than fluid, but the signs of having extra fluid on board were there. This is why we gave her the 1mg dose of Bumex on Wednesday, and then 2 additional .5mg doses, 1 on Thursday and the other Friday.

Ella still seemed to be having trouble today though, and with all that diuretic, we were surprised. After talking through all the symptoms with her pulmonologist, he suggested that we give her one more 1mg dose of the Bumex. We did, and we waited for a big diaper….but the big diaper didn’t come. 2 hours went by…still no big diaper.

If she’s not peeing out, this means she’s now probably too dry. We called the doc back, and considering we had to have Ella on 2 liters of O2 just to keep her saturating in the 90’s, and with her still be fussy, he now wanted us to go to the ER to have labs drawn and a chest x-ray.

So we packed up the car, and even threw in a nights worth of clothes and sleeping stuff (i.e. blow up mattress, etc) just in case we were admitted.

Well as soon as we got to our room in the ER, Ella took a little nap, woke up, and started behaving more like herself. We weaned her down to 1.5 liters of O2, and she maintained her saturations ok.

The wanted to draw blood for a BMP and they decided to place an IV at the same time. Last time we were in the ER, they tried 4 (maybe 5) times to place an IV, but it didn’t happen. This time they got it on the first try! So glad it worked out this way.

After the IV, Ella went down for a chest x-ray. After she returned we had a great time just playing and tickling her. She was behaving so well, which was very surprising.

The docs came in with the results from the BPM and x-ray. Her lungs look no different than her last x-ray, which is good. Her electrolytes looked alright overall, but her BUN was pretty high…it came in at 38. The higher that number, the more “dry” Ella is. Ella seems to do well somewhere in the high 20’s, but this was on the high side for her.

The pulmonologist wanted to give her a dose of IV fluids then have us hold her Aldactized (thiazide diureted) for the next 48 hours. We didn’t feel comfortable giving Ella a bolus of fluids because the last time we did, it took almost 2 days to get her back into a “good” place. Plus, she wasn’t showing any secondary signs of major dehydration (i.e. good cap refill, tears when she cried, etc.). We compromised and said that we would hold off on giving any diuretics for the next 48 hours.

Everyone was all good with this, so they sent us home. SO glad we were not admitted to the hospital.

At this moment, Ella is sleeping soundly, saturating 100, and is down to 750mls of O2! Praying that she sleeps through the night because she hasn’t for the last few nights.

Sleep would be good…which is what I’m off to do now. Thanks for all the continued prayers, love, and support.

Psalm 33:20-22 (New Living Translation)
We put our hope in the Lord.
He is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
Let your unfailing love surround us, Lord,
for our hope is in you alone.

Ella definitely has fluid on board. She was 8.66 kilos last week and increased to 8.93 kilos as of this morning. The ideal weight would have been 8.7 kilos. It simply confirmed that fluid overload is part of what is going on with her this past week.

The bummer is that we have already given her 1.5 mg of Bumex. Once we got the weight this morning, we gave her the other .5mg of Bumex. Now, she has had her max amount that we are allowed to dose at home. If she does not improve overnight and into tomorrow, we will have to contact the pulmonologist and ask for next steps.

This past week, we tried increasing the calories in her food to 28/kcal. However, when we were having all these problems, we opted to go back to 26 k/cal as of this morning. We were not sure if the density of the food was contributing to her fussiness and wanted to eliminate another variable. We may be able to try again, but it will have to be when she is in a better place.

She did seem to be in a little bit of a better mood today, so we’re hoping that we are on the right track. And we’re tired from this emotional week. So, we are praying that she sleeps tonight so that we can catch up on our zzzs too.

Ella was up all night last night. Literally, every 20 minutes I was running down the hall to her room. She was uncomfortable and not able to sleep. I tried everything and nothing seemed to work. Between yesterday waking up at 3:30am and last night not getting sleep at all, it is surprising that I was able to function today.

You can tell that Ella doesn’t feel that great. She was just fussy and cranky, all day. We’re not sure exactly what is going on but our guess is the normal culprit: fluid. We opted to give her 1/ 2 dose of Bumex today (total 1.5 mg in the past 24 hours). While assessing her behavior and numbers tonight, we think she might need the other 1/2 dose of Bumex. She is requiring 1.5 liters of oxygen and her heart rate is higher. These are classic symptoms of fluid overload.

Speaking of additional fluid, she has been so thirsty! Last night, when I would run to her bedside, she was coughing and sounded dry. I would offer the bottle and she would down a bunch of liquid and then retch. After a spell, she would roll over and try to sleep. Twenty minutes later, we repeated the exercise. So throughout the night, she took way more than she is supposed to by mouth. This is likely not helping the situation.

We are going to wait until she is weighed in the morning by the home nurse. Last week, she was 8.66 kilos. If she is within .1 kilos of last week, we may opt against the Bumex. If it is higher, it is confirmation of fluid retention and means we need to give the Bumex. We’ll see how she sleeps too. Praying that she will sleep since we are exhausted!

Part of the rough week or so is that I decided to quit my job. Tomorrow is my last day. It was not a good fit for me; I was stressed all the time and didn’t feel valued. As I was struggling to make it work, especially since I felt God led me to the job, I kept asking for guidance on what I was supposed to learn from this situation.

Then, I also remembered that maybe this was not so much about me learning something as it was simply the timing of the situation. There is no way that we would have moved back into our house nor hired Kelly to take care of Ella if I had not been offered this job. But it was a short lived situation. It is a bummer that it did not work out, and yet, I am interested to see what the next steps are in this journey. There is a reason that it all worked out this way. I will be looking for something else, but in the mean time, I’m looking forward to taking a break for the next week or so. I have not had a break in a long time. Heck, maybe I’ll just plan to sleep in for awhile!

So once again, lots of change for the West family. We’re looking to Him for guidance as we take the next steps. And we pray that He will heal Ella’s fragile body and restore her health.

Ella slept well last night. However when the cat woke me up at 3:30am, I was not able to go back to sleep. So I decided to peek on Ella and check out her numbers. Unfortunately, they did not look great. She was saturating 98 with a heart rate around 135ish. When she is in a good place, it is 30 beats lower per minute. So, it was clear that her heart was working harder. And although she was saturating fine, many times in the past her heart rate would be at 100 for a solid stretch of time. Therefore, we opted to give her a dose of Bumex to allow her to urinate off any excess fluid.

We’ve been noticing a trend where she requires a dose or two of Bumex to get things back to a stable point. Sometimes, it has required 2 doses of Bumex. We’re hopeful that one dose will do the trick.

I have much more to share, but I’m literally falling asleep as he I type this out. It’s been a long day!

Thanks for all your love, support and prayers.

Ella was fussy most of the day. The picture above seemed like one of the only moments that we were able to catch a smile.

She was up many times last night. I was out of bed about 6 times between midnight and 6am. Then, I just gave up and decided to face the day albeit tired.

Kelly kept checking Ella’s temperature throughout the day. Also, she hooked her up to the pulse oximeter to watch her numbers. Ella was requiring more oxygen. And she never had a fever but her stools were loose. She was fussy and cranky. Therefore, her therapy sessions did not go well. Ella just wasn’t in the mood.

Tonight, the OT, PT and case manager from the federal and state funded intervention program came to the house for a Care Conference. It was a chance to update the original evaluation that happened over the summer. So, it had been 6 months and we were able to review everything related to Ella (growth, doctors, medications, developmental milestones, physical, cognitive skills, emotional, speech, etc.). Based on our evaluation, Ella met the few goals that we set for her back in the early summer. So we discussed new goals for Ella to achieve over the next 6 months, like sitting up with minimal support, rolling from back to belly, eating 1 ounce of baby food 2x per day, etc, etc. Now that we have a solid PT and OT in place, it will be good to see if we can meet or exceed these goals we’ve set.

On a similar note, it looks like our insurance plan is going to kick in and cover additional OT sessions too. This means that Ella will be able to have PT & OT up to 4 times per week. This is really good for her considering that we have so much catch up to do.

We also talked about speech therapists. There is a good one that lives close that might be available starting in March. We know that Ella will need some help in this way. And something we have not shared lately…we’re a bit concerned that Ella might have hearing loss. She doesn’t just respond to our voices or noises. Her initial hearing test was inconclusive. Based on the brain activity they noted at the time, it seemed like things looked okay, but the test was not complete. In fact, they mentioned that she might be having trouble hearing low frequencies, but would need to test at a later date to get better results (test upcoming in March).

The likelihood of hearing loss is very real. Ella is at a higher risk since she went on ECMO and has used diuretics for a long time. Both can cause hearing loss. When you begin to think of her journey and realize what it might mean for her in future days, it makes our hearts hurt. Ella has enough obstacles to overcome, much less hearing loss. We pray that this is not the case.

Psalm 13 (NLT)
O Lord, how long will you forget me? Forever?
How long will you look the other way?
How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?

But I trust in your unfailing love.
I will rejoice because you have rescued me.
I will sing to the Lord
because he is good to me.

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.