Posted (Tina) in All Posts on August-27-2009

Well, we think that it might have happened at the end of last week at the Children’s Hospital. Long story short: Ella got sick and started with symptoms on Sunday, Josh felt them strong on Monday and me on Tuesday. So we’ve all been at home trying to recuperate. The good news: we don’t have fevers or anything. Just sore throats and stuffed/runny noses. But we’re managing.

I still have photos from our Copper trip, so I’m going to pleasure you with those on this post rather than up-to-date pictures of the West family with sniffles!

A quick update on Ella: last Friday we went to Children’s Hospital for another hearing test. The test was pretty much the same: no mid to low range hearing. However, the tympanogram came back “normal” for both ears (testing for fluid in the ears). This is the first time it has ever been normal. They recommended that we return in 6 months to test her hearing again.

I have not appreciated the relaxed approach when it comes to Ella’s hearing. The audiologist is very sweet, but it is this approach of “wait and see”. And that makes me uncomfortable, knowing that if certain conditions do exist in the ears, you can cause hearing loss by ignoring it. So, I made an appointment with my ear doctor to take a look at Ella. By the time he saw her this past Monday, she was already into her cold. So, the tympanogram was not normal and he could see fluid in her ears. Who knows if this was directly related to the cold or not?

At this point, Ella does not cooperate with a regular hearing test in the sound booth. She gets so upset. The only true way to rule out hearing loss is by sedating her for a procedure and hooking her up to a machine that will track her brain waves. At the same time, they could put ear tubes in. This is a low-risk approach to eliminating any fluid accumulation and definitively letting us know that any hearing loss tests from that point forward would not be related to fluid. But we feel torn because we don’t want to put her under anesthesia just to test hearing. We know she can hear some things, we just are not sure how well. Developmentally, she is behind and it is hard to tell if hearing loss is contributing or not…and it would be nice to know…but I’m not sure we want to take that step just yet.

If we knew that Ella was going to have another procedure in the coming months, it would make sense to do it at the same time. For now, we are going to go back to my ear doctor in 6 weeks to see if there is still fluid in her ears. From there, we can make a decision.

As far as feeding, Ella has still been having some challenges. When we came home from the hospital, it seemed the Reglan had kicked in and worked beautifully. Then, we decided to try increasing feeds while we were in Copper last week. After trying the increase for the entire week, we realized that it is still too much volume for her to handle 4 feeds per day. She gets fussy, uncomfortable, and ends up getting the runs. This is part of the reason we had the “violent explosion”. I did not share that there were several days at Copper where I was changing her outfit and bed up to 5 times per day. Yes, I was constantly doing laundry on vacation!

I’ve since spoke with her pediatrician. He thinks that the larger volume is better able to empty from her stomach with the Reglan, but that her intestines cannot process that much food all at once. Therefore, it gives her the runs. We don’t think the runs is from her cold or a virus because we have been dealing with it for a few weeks now, way before she became sick the past few days. And it does seem like the runs initiate if you try and feed her more food during a feed session and/or if the feeds are timed too close together.

Also, she has been more dehydrated. Whenever Ella lets you know that she wants water from the syringe and opens her mouth for more, you know that she has instinctual thirst going on. She did that before our visit to the ER and then started doing it again the past several days. The runs can make you dehydrated.

We returned to 5 feeds per day earlier this week, but it still doesn’t seem like enough. Dr. Perry wants us to go to 5 smaller feeds during the day and the food pump at night, to see if that resolves the problem. Once again, several steps backward. The good news: usually this means that we can take steps forward at some point too! So we’re trying 5 feeds today at 225ccs and then 225ccs in the food bag overnight. We’ll see if her #2 returns to normal in a few days.

Finally, we had an appointment with her pulmonologist a couple of days ago, but canceled since we were all sick. We wish the timing would have been different. Ella’s collateral veins have re-appeared on her chest. They existed there prominently before the SVC procedure, but this is the first time we have seen them visibly return since the placement of the SVC stints. We’re scared about what that might mean. I just noticed them earlier this week. Maybe they would be nice and magically disappear, but that is not likely. This means that going back into the heart catheter lab might be in our near future. We’re trying to reschedule the echo-cardiogram to check the SVC flow and pulmonary hypertension, but have yet to receive a call back with a date.

On a final note, please lift up Josh in prayer. He has a third interview with a company tomorrow. We’re hoping it goes well and if it is the Lord’s will, that He will continue to open the doors for this opportunity.

Posted (Tina) in All Posts on August-23-2009

If you did not catch yesterday’s post, this is just a continuation with photos. Enjoy!

Posted (Tina) in All Posts, Resources on August-22-2009

Yes, I know it must feel like it has been forever since we posted. Actually, it has felt like a long time to us too! I can’t believe that it has been 2 weeks. The unfair part is that I did not warn you that we went on vacation for a week. So although it might have seemed like we were just withholding pictures of the Bun, it was simply that we were doing our best to disconnect while we had the opportunity.

One of the nurses that bonded with Ella in the NICU, affectionately called “Aunt Marla”, came to Denver with her husband, Darryl, for a vacation. All of us went to the mountains for a week to relax and unwind. The weather was a bit cooler than expected for August, but it was still beautiful. Most days we did our best to simply relax, take in the fresh mountain air and enjoy the views. We did, however, play a couple of heated battles of a card game called Phase 10.

Ella did pretty well, although she was at 2 liters of O2 our first night which was a bit concerning. Fortunately, she adjusted after a few days and required 1.5 liters during the day and 750ccs at night. This is about double her O2 requirement in Denver. It’s amazing how altitude can make a difference.

Also, we decided to go on a some excursions during our mountain trip. We went out to restaurants a few times for dinner. This sounds basic, but is not a normal activity with the Bun, so it felt like an excursion. Most notably, the biggest trip of the week was a drive to the Rocky Mountain National Park. It was going to be an all-day event, and since the weather was nice, it seemed like a great idea. A couple of things surfaced unexpectedly.

First, the views were a bit disappointing. Normally, the mountains are green and magnificent this time of year. But one thing that is under-reported is the infestation of mountain pine beetles throughout the Colorado mountains. This started several years ago with a mild infestation. We had not been in the mountains for quite some time. Now, it has taken over entire peaks. Most of what you see are brown, dead pine trees. Apparently, the pine beetles are hard to control. On top of that, most of the peaks are in national forest grounds. So the political mess of getting permission to spray on top of the cost, explains why the mountain sides are covered with dead trees. And once the trees die, there is a regulation in place that prevents them from pulling the trees for up to 7 years. This was just sad to look at and took away from the normal beauty that you see in our mountains this time of year. Bring on the snow – – at least that covers it all up!

The other unexpected occurrence was a violent explosion. And we’re not talking about a volcano, but it could have masked as one. The day prior, Ella had not gone #2. So we knew that there was a high chance of that happening on the drive. However, we had never experienced anything like this event. Fortunately, we were just reaching the top of the Rocky Mountain National Park, where there were restrooms. Just before hitting the peak of the road and the parking lot, Ella let out a violent explosion. Both men in the car just about lost their cookies out the window. It smelled so bad, but we laughed and knew that Ella must be feeling better. A couple of minutes later, we parked in the handicap spot. Our guests went to get a coffee, use the restroom and look in the gift store. Josh pulled Ella out of her car seat, so we could walk her to the other side of the car to change her. This always takes two people because you have to take the oxygen tank with you too. So, he grabbed her under the armpits and began to lose balance, so he placed his hand on her diaper while walking to the other side. The pressure placed on her butt was the only thing needed to let it loose. All of a sudden, poop started flowing out of both legs and onto her socks. We were catching poop with our hands while trying to place her on the changing pad and not get it all over our car. There was so much everywhere including on her clothes, hands, feet, etc. And Ella was crying so hard, losing the color in her face, and yet the O2 tank was already at its maximum setting on 2 liters. We used about 12 pounds of baby wipes, had to disrobe her and give her a complete wipe down with baby wipes. The wind was blowing chilly air, Ella was nude in the car and we are trying our best to clean up baby poop. Once we cleaned her, ourselves and the car, I headed to the restrooms to do laundry. Fortunately, I was prepared with soap. I sat in the restroom for what seemed like an eternity and hand washed all of her clothes in the restroom sink. There was no choice, unless I wanted to throw out her outfits. Many women gave me a sympathetic look, as they washed their hands in nearby sinks using the freezing cold water (the national park does not heat any of the water). With numb hands, I walked back out to the car in a fog. Our guests had purchased us a hot latte to sip. That is a sign of true friendship. I needed that warmth as I truly felt traumatized.

Mind you, we’ve had plenty of blowouts. But we had never experienced one like this in the car where poop was literally going everywhere. And it might have been just as traumatic down the hill, but somehow, this happened on Trail Ridge, which is the highest road in any US National Park (12,183 feet high). We will forever have memories of this violent explosion.

We had another blowout in the car later and yet another one as we pulled up to the condo at the end of our day. Aside from poop, the road trip was great. And our guests were gracious and forgiving. We did enjoy the rest of the scenery, the ride through historic mountain towns and fantastic pizza at Beau Jo’s with great 80’s music playing.

The remainder of the week, we could usually catch Aunt Marla taking pictures of flowers, Uncle Darryl relaxing with rum and coke in his hand, Josh taking a dip in the pool or me doing laundry (going on a vacation doesn’t change motherhood that much!). Overall, it was just a great time.

On a final note, we decided to drive home one day early, so we could take them to experience downtown Denver. We enjoyed one of our favorites for dinner, Vesta Dipping Grill. This way, they could also be much closer to the airport for their journey back to Gainesville, FL.

We have so many photos to share, so I think I might post some of them below and then continue to post more each day until we run out. This way, you can all have a peek at the beautiful scenery and pictures of the Bun over a few days.

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

Man, it has been a gorgeous weekend. We feel like we are on vacation. It has been ideal. We reminisced how nice it was to visit the park last weekend and we have a sizable yard, so we made the backyard our park yesterday. All of us laid out on the blankets and relaxed together.

This morning, we spend half the day on our deck, enjoying the perfect 75 degree weather and watching the golfers. It was a bit on the bright side, so we even convinced Ella to put on some sunglasses!

Since we came home this week from the hospital, Ella has done great with her feeds. We’re right back to bolus feeds as if it were the week before last and nothing ever happened. Except now, Ella does not make a peep with any feeds. The Reglan medicine works wonders for her. We’re going to keep things the same for a bit and then we’ll look to work towards 4 feeds per day.

Josh has 2 interviews this week. We’re just knocking on all the doors possible and waiting to see what God has planned for the next chapter.

Thanks for all the continued love and support.

1 Peter 5:6 (NLT)
So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor.

Posted (Tina) in All Posts on August-4-2009

We’re home tonight with Ella.

We have good news and more good news. The good news is that they figured out what was wrong. The even better news: it does not require surgery. In a nutshell, her gastric emptying and overall motility in her bowels is too slow.

As soon as the 3.5 hour test started, I looked on the screen and noted that her stomach was not emptying like I’ve seen it do before during prior upper GI tests. Even after 20 minutes, only a small trickle of the contrast liquid had left her tummy. After 2.5 hours of the test, one third of the contrast liquid was still in her stomach.

So the other day when I fed her a larger amount of food, her tummy accepted it without a problem. But as soon as I did that same larger volume a couple of other times (and since her tummy was not emptying properly), it became painful for her.

When the radiologist started discussing the slow gastric emptying, a light bulb went on for me. The medicine that we discontinued in mid-May was Reglan. That medicine is given specifically for this issue. She had been on Reglan since her early NICU days. It’s been weight-adjusted over time. It is one of those medicines that there is not a specific time frame for how long kids should use it. And the only way to truly know if it should be discontinued is to try. Well, we tried and it didn’t seem like she had any problems.

The past 6 weeks have been interesting with feeds. When she would see the syringe and food coming, she would whine a bit like she wasn’t looking forward to it. Since she had no other symptoms or side effects, we assumed that it was her just being a 2 year old. Now we think that maybe she was experiencing some discomfort, but not enough for her to make a big deal out of it. However when I tried to condense her food the other day to four times per day versus five times per day, she let us know that she was in a lot of pain.

We knew that something wasn’t right. And we see this as a blessing in disguise. She has probably been experiencing some discomfort with feedings for awhile now. And we were going to look to condense her feeding times at some point – it was just a matter of time. Now that we discovered that Reglan was still helping her significantly, we can likely accomplish moving towards our goal of feeding 3 times per day over the next several weeks. Plus, Ella won’t be experiencing any discomfort.

We’re just so thankful that it was not anything major that required surgical intervention. Praise God!

We’re all happy to be sleeping in our beds tonight. Ella went to bed early – she was very tired from the lack of sleep over the past 36 hours. We’ve already given her the first dose of Reglan and her first bolus feed at home and hope that things will just get better from here.

Posted (jooosh) in All Posts on August-3-2009

Ella was having some trouble with her feeds the last 24 hours. We started the process of consolidating her feeds down from five per day, with a goal of eventually three feeds per day.

We started yesterday and she took the first increase alright, but the next one she was more uncomfortable. The final one for the day pushed her over the edge and she was very inconsolable (lasted an hour and a half last night). Normally if we increase her volume per feed she will just push it back out and settle down. This time was different. She was experiencing labored breathing and acting like she was in some kind of pain which is not typical with feeds.

This morning, Ella woke up in a great mood. She didn’t fuss at all during bath time and overall was real happy, that is, until we began feeding her. She started behaving very strange and fussed in a way that is not normal.

After she calmed down, we packed up the car and headed downtown to run some errands. On the drive, I could really hear Ella breathing behind me in the car seat with labored breathing, which is not normal. This was also concerning. When it was time for her next feed, we decided to take it very slow and only give her 100ccs of food. She lost it immediately and was very inconsolable.

So, we now find ourselves in the ER.

They assessed her, took a chest and belly x-ray, and placed an IV. She’s not running a fever, nothing too glaring on her x-ray, and her blood work came back fine. To be safe though, they want to watch her overnight and do a upper GI study and small bowel series sometime tomorrow.

Nothing says home like a good nights rest at the Children’s Hospital.

We’ll update once we know more. G’Night all.

Posted (Tina) in All Posts on August-2-2009

It’s been a busy week.

Ella had her 2 year checkup with her pediatrician this past Thursday. Her weight was 25.5 pounds (35% percentile), 33.75″ long (45% percentile), and 18.87″ head circumference (60% percentile). Dr. Perry was happy with her progress. He wants to see her gain 1 pound every 3-4 months for the next year. He noted that she had great weight gain the past several months and she is on a great growth track; pretty normal for most kids. So, we don’t have to do any fluid increases with formula. He noted that we should try and reduce the number of feedings each day to 3 times per day (currently, she is at 5 times per day). Also, we’ve been working up to using baby food via the g-tube. He said that we should work up to using 2 jars of baby food via her g-tube each day. The pureed food will help give her more calories without impacting fluid. He is planning on researching the Junior formula made by EleCare. Although he is fine with her staying on the current formula for up to another year, he wants us to move towards a formula that is more age-appropriate for toddlers.

“I is not been drinking ociffer”

Ella had some granulation tissue around her g-tube that he took care of for us. Also, she received her Hepatitis A shot, so now she is all current. He thinks we should fight for Ella to receive Synagis shots again this year. Our current insurance company told us that the synagis shots are not effective after a child is 2 years old. Dr. Perry is going to research and get back to me. We are scheduled for another appointment on October 1st. He wants to make sure that Ella receives a flu shot before the fall starts.

Dr. Perry noted the dark spots on some of Ella’s teeth. I’m so thankful that he had the name and number of a pediatric dentist that is tied into the Children’s Hospital. Given Ella’s history, I can’t take her to a regular dentist. She will need to be sedated and I want to make sure that it is someone that deals with special needs children, especially considering all of her medical needs. Dr. Perry told me that many times kids will get the spots and it turns out to be a short-term issue with no lasting impacts. He agrees that it is likely from her medicines and just being sick for so long when she was an infant. But he wants us to go get it checked out.

One thing that Dr. Perry said hit home pretty hard. He asked about her oxygen requirements. I explained that they have really not changed much since we came home last year. We saw a slight improvement after her SVC procedure, but not a huge amount. She is currently 750ccs during the day and 500ccs at night. Then, he took a deep breath and told me that he thinks I need to have a long-term perspective when it comes to the oxygen, especially because we live in Denver with the higher altitude. Then, he told me that many of his patients that are on oxygen like Ella do not grow a significant amount of lung tissue to make a difference in the supplemental oxygen needs until they are 7 years old. My heart sank…until she is 7 years old? He talked about how the lungs grow and develop and that with many of his other patients, it has taken many years. Wow, that was not what I expected to hear.

When we walked out of the doctor’s office, Josh was waiting in the car to pick us up. When we approached him, Ella distinctly said, “Da Da”. That is the first time that we feel like she has intentionally recognized Daddy in that way. It made Josh’s day!

We used the yearly pass for the zoo that Grandpa gave Ella for her birthday and went to visit the animals again. It was just nice to walk around, sit in the shade, people watch, and of course, look at the beautiful tigers, leopards, giraffes, etc. Also for the first time, we went to City Park and just laid down a blanket in the shade. Ella took a snooze and then woke up and looked around at the grass, trees and squirrels. It was a nice, relaxing time as a family. Just trying to live in the moment and enjoy our time together.

On a personal note, one of our rental properties was ready to be turned. So most of our free time was spent getting it ready. We feel blessed to have found a great new tenant. The Lord provided and we were able to turn the unit without any down time.

Josh had an interview last Friday. We’re not sure how that will turn out – just waiting to see what happens next. My desire is to stay at home with Ella, but we it doesn’t look like that is going to be financially possible, even if Josh gets a job soon.

Please continue to pray that the Lord will guide us in the next steps. We desire to be obedient to Him and follow His leading in our lives.

Psalm 143:8 (NLT)
Let me hear of your unfailing love each morning,
for I am trusting you.
Show me where to walk,
for I give myself to you.