Ella has been having challenges during the night, especially going to sleep after her last feed of the day. And about 2 weeks ago, I mentioned to Josh that it sure seems like she is complaining more when we feed her. Well, she put up a good fight last night, not going to bed for a few hours after her normal scheduled time. The only thing that seemed to work was venting her and letting some of the food out of her belly.

Then, this morning she complained A LOT. I’m used to a bit of whining (she does not enjoy being fed), but it seemed like she was telling me more. I checked her belly and it seemed really distended and hard. I guess it just seemed like it was a repeat of the first week of August this past summer where we went to the ER and ended up being admitted for a similar issue. What did we discover? That Ella’s tummy is not emptying like it needs to. The medicine that helps with gastric emptying, Reglan, is a necessary medicine for her. Without it, her body does not function properly. Right now, she has been on Reglan. But I had this sense that it needed to be weight-adjusted.

Before calling the pediatrician, we weighed her. It seemed like she might have some fluid on board. The last time we weighed her in early December, she was 31.5 pounds. This morning, she weighed 33.4 lbs. Mind you, she had her clothes on, but still! That is a HUGE amount of weight gain for her. And it sure seems like it is coming on quickly. When she was given this dose of Reglan last summer, she weighed around 25.5-26 lbs. Sure enough, as soon as we increased the Reglan, she returned to normal. I’m so glad that we learned from our experience last time and it only took a simple call to the doctor.

We went to the ENT last week and the doctor agreed that more needs to be done to help Ella with her daily mucoids. The Nasonex and Prevacid have helped with the fluid in her ears and cleared out her nasal passages and sinuses. However, Ella still struggles with her secretions every day. The doctor mentioned that dryness makes it worse. So normally, she would tell me to increase her free fluid and give her lots of water. Apparently, the increase in fluids would help break down her secretions. But with Ella’s history of fluid issues, she does not want to make any changes.

Ella is due for all her checkups the first week of February. She has an echo scheduled, her pulmonary check-up and the pediatrician. Once we meet with all those doctors, we will go back the next week to see the ENT. We’re hoping that the echo shows that her stints are in good shape (we’ve seen some collateral veins intermittently). We’re hopeful that her pulmonary hypertension is in check. Ella seems like she has been requiring more oxygen. Back in Nov/Dec, we thought it might be nasal occlusion. But her recent trip to the ENT eliminated that theory. So we’re curious to get these check-ups and see if they have any thoughts on her increased O2 requirement. We’re anxious to see the pediatrician to discuss her rapid weight gain and the plan for food. Her doctor has wanted to switch her food to a more appropriate toddler formula, but we wanted to increase the density of the food to 30 k/cal first. Now that we’ve accomplished that milestone, we will be looking to switch foods and manage her weight gain.

What is that over there? Oh yeah, the Pack-n-Play! Ever since we set up a new play area on Dec 28th, Ella has not been back in her Pack-n-Play. It has been great for her to be out and have more room to explore. During a recent PT therapy session, Ella got on all fours and took a couple of steps crawling. The PT got tears in her eyes. Isn’t that sweet? She just knows that it is such a big milestone for Ella. Again, we’re still a ways off from Ella fully crawling or walking around, but she is still making progress.

Today is Aunt Shannon’s birthday. And tomorrow is cousin Richard’s birthday. We wish we could be there to celebrate!

Well, the day started with a beautiful sunrise.

Ella has been in a great mood the past few days. She even enjoyed occupational therapy with whipped cream as well as physical therapy yesterday. But last night for her last 2 feeds, she started to complain a lot again. It seemed like a repeat of last week. We went to bed and figured we would see what today brought for us.

Sure enough, by the 2nd feed of the day at 11:40am, she was in lots of pain. Her tummy felt hard and distended. Again, it just seems like it is not emptying. We tried so many things and she was not consolable. The only thing that provided some comfort was holding her. If you tried to lay her down or walk away, she would lose it. It is so hard because it could be so many things. For example, her oxygen requirement has been higher and it appears that her collateral veins are beginning to reappear. If there is increased pressure in her veins from the stints, that could be uncomfortable for her.

It is the worst feeling to have a child that has an ailment. Even more heartbreaking is not knowing what is wrong and then facing the reality that there is nothing you can do to make it better. Ella is so complicated which means that it could be so many things. I feel like we have to review all the clinical symptoms and “do rounds” before Josh and I can come up with our hypothesis and practice medicine.

Once we were 99% sure that food was the culprit (2 hours later), we decided to vent her. Even by this time, her belly was still firm to the touch. Even though we fed her 235ccs at 11:40am, here it was 2:40pm and we easily vented 275ccs without a problem.

Sorry for the picture, but it is a good visual so you can see how much fluid was in her tummy, sitting in there hours after a feed. (The color is just her digestive juices). Once we vented all that food out of her belly, she stopped crying and returned to a more normal state.

We called the pediatrician to get his thoughts. He did not think that increasing the Reglan even further (the medicine we increased last week for gastric emptying) would fix the problem. And he is not comfortable giving more direction until he examines her. Our scheduled appointment was not till February 4th. But at this point, it is tough to feed her. So, he made room in his schedule to see her tomorrow during his lunch break. Now that is a dedicated doctor!

Since Reglan was not the silver bullet, we’re wondering what could be causing her tummy to not empty, even with the higher Reglan dosage. It will be interesting to see what he says tomorrow.

In the meantime, the food pump is back in use. We figured a slow drip of diluted formula will at least keep her hydrated. Sigh…we hate the food pump and it is so much more challenging to use it since Ella moves around so much. She’s always twisting herself around the oxygen cord, but that is not a big deal. With the food pump, if it comes undone, it starts dripping food everywhere (nasty). Or even worse, it can pull out her g-tube. Then you get dripping food plus gastric juices everywhere (even more nasty)! But we are trying out a slow drip for the next several hours and still debating if we want to use it tonight. The last time we tried, we had problems with the g-tube coming dislodged.

So far, the Bun has been doing okay on a slow drip, but as the hours pass by and more gets put into her system, we’ll see how she does. It might be a long night. Please pray for her comfort and for discernment and knowledge for Dr. Perry, who will be trying to figure out the mystery child tomorrow!

Another beautiful sunrise and another new day. Thankfully, Ella is feeling better.

Dr. Perry was satisfied with Ella’s overall progress since he saw her last October. Once on the scale, she weighed in at 33.2 pounds. Ella is not obese, but gaining 8 pounds in 6 months is too fast (most kids will gain up to 6 pounds between ages 2-3). So, we are going to cut back on her food intake. She was taking 1175 ccs of EleCare at 30 k/cal (1175 calories per day). Now, we are going to try 1000ccs of EleCare at 30 k/cal (1,000 calories per day). In order to make her comfortable, we have to use the food pump for feeds. Basically, we’re just taking two steps backward. Then, just gradually we will increase until we get back to 100% bolus feeds.

Also, he noted that Ella’s system is fine but she has delayed motility. Many kids with cardiovascular disease have slower metabolisms which can also contribute to slower motility. Her developmental delay can play a part too. She is not as active and lays around more than a healthy kid her own age. This can all impact motility and processing of food. He is hopeful that as she ages, this will improve. Also, he noted that Reglan only has a limited effect on the issue. He decided to increase her Reglan intake to 1.5ml four times per day. About 10 days ago, she was taking 1.0ml three times per day. Then, we tried 1.5ml three times per day this past week and still had a problem. So now, we are adding an additional dose of 1.5 ml each day to see if it will make her more comfortable.

We have another appointment scheduled with Dr. Perry for February 4th. We decided that it would be best to keep that on the schedule. By then, we will have seen her cardiologist and pulmonologist. We can weigh her again to check weight gain as well as discuss her feeding status.

When they placed the pulse oximeter on Ella at Dr. Perry’s office, it took 1.5 liters of oxygen to get her in an acceptable range. Right after her SVC procedure last September, she only required 750ccs of oxygen. So, her oxygen requirement has doubled. The collateral veins are slight but have reappeared. Last night, it seemed like Ella had a headache. We knew it was not food or tummy related based on her feeding schedule. But she was whining a lot and blinking her eyes frequently. Her eyes even appeared a bit puffy and light purple. We gave her Tylenol and she perked up after about 30 minutes. Headaches can be a side effect of increased pressure in her veins from the SVC becoming blocked (likely her tissue has grown into the mesh stents). I’m hopeful that maybe all of this is not related to her SVC, but it sure seems like all the signs are pointing that direction.

I’m not really mentally ready for another procedure in the heart cath lab, as it has only been 4 months today since the last procedure. In any case, the echo that will determine if another procedure is necessary is schedule for Tues, Feb 2nd. If we need to proceed with another one, that would mean 3 heart procedures in one year.

For now, we are laying low attached to a food pump and trying to take it easy until all her tests can be completed. Thanks for all the thoughts and prayers. They are always appreciated. And of course, even with all of this, the Bun manages to move around and crack plenty of smiles.

Psalm 9:10 (NIV)
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

Hey there Ella Fans! It’s been awhile since I (Ella’s dad) threw a post out there. I wanted to share a special moment with you.

Overall, life has been challenging with some days being better than others. I’m guessing that statement really sums up where a lot of families are right now.

October and November of last year were solid for my consulting business, but during the December holidays the work screeched to a halt. Not totally unheard of for that time of year, but the hope of things really picking up in January stalled quite a bit. Between the lack of consistent work and other family challenges, some of which Tina has posted about, it can really take a toll on your emotions and even your faith.

We took some video of Ella this last Monday, the 25th of January. This was after a day of going over our budget and discussing the direction we should take in life. It can be overwhelming to look at the storm going on around you and in those moments it’s easy to forget to keep your eyes on Christ. You find yourself starting to sink in the water with the waves crashing all around you…

….but peace was found in God affirming how awesome our little miracle is:

Above was the first day of her really crawling…below is the next day…

Thank you Lord for never leaving or forsaking us. Thank you for reminding us that you are always there and will never abandon us. We praise you for this sweet, amazing, wonderful, miracle of a child you have blessed us with. May our eyes continue to remain fixed on you, because we know that when we do, your peace is more powerful than any storm that surrounds us.

We’re here at the hospital. Ella started having feeding issues after her 5pm feed yesterday. As the night progressed, it became apparent that she was in pain and would not tolerate formula. We gave her water and Pedialyte to keep her hydrated and even with that minimal fluid, her abdomen was distended and giving her problems. She was not consolable and the only time she would relax for a few minutes is if we vented her g-tube. When we did, lots and lots of bile came out, just like a previous photo I posted on the blog.

With us going on 3 weeks of feeding issues and no true resolve, we began to suspect something more serious. So when Ella continued to cry at 3am, we headed for the ER. After a belly xray, they noted some abnormalities. After sitting in the ER for several hours and taking 2 hours to put contrast in her system, we headed for an abdominal CT scan to dig deeper into the issue. They were looking for a possible partial or complete bowel obstruction and/or any other abnormalities.

Either way, they decided to admit us to the hospital. Once on the 9th floor with a great view of the mountains, it was about 3pm. We settled into our room and they just came in to let us know that the surgeons do NOT want to give her surgery. We are SO thankful. The abdominal CT scan did not give them reason or concern enough to warrant surgery. They did note that she has stool sitting in her intestine which can cause blockage and obstruction. For tonight, they have ordered an enema to clear her out, give her intestines a break and plan to reassess tomorrow. From what we can tell, it is likely we will be here another 2-3 days.

Right now, Ella is sitting in her crib enjoying her videos. Since she is just on an IV drip and not being fed via the g-tube, she is not in any pain and is in a good mood.

Thanks for all the thoughts and prayers. We will keep you updated as her hospital stay progresses.

Psalm 107:35 (NIV)
He turned the desert into pools of water
and the parched ground into flowing springs

Ella slept fantastic last night. We had a great nurse that was stealth in checking vitals in the dark and opening/closing the door. So, I got a solid 6 hours and Ella grabbed several hours more. After being up for nearly 2 days, it felt great to sleep. Josh actually went to Grandpa’s house with Lola to sleep which is a short 10 minute drive from the hospital.

This morning, Ella had an enema to clear out her colon thus the title of this post. A little came out during the enema, but nothing since. We’re hoping this is a sign that her system is truly cleared out. Doing multiple enemas would insure that everything is cleared out, but it can throw off electrolytes. In the past, they have had a tough time “regulating” her electrolytes, so they want to be conservative and only give 1 per day.

About an hour later, we went downstairs to get more abdominal xrays. They wanted to compare the films to yesterday and verify that all the stool had cleared out of her intestines.

There was a bit of concern with dehydration since her urine output was very low (basically non-existent) overnight, even though she was taking in 50mls/hour of an IV drip. We’re happy that her IV is staying viable since many times they clot off within a few hours. Fortunately, it seems that her system is catching up and she started to urinate more this afternoon.

Then, we had another stick for a blood panel. It was irritating because they did not send in the best team. So we went through a tough 20 minute process of them trying to get blood and failing in two places. I finally cut them off and said that Ella needed a break. It was really a convenient way for me to cut them off and request someone else. And that is exactly what happened. Then, we ended up getting someone that knew us from a prior visit and the stick was successful and much less painful.

A nutritionist came to see us and discuss next steps with food. I reviewed history and gave her the number to our pediatrician. Ella’s pediatrician really wants to move forward and give Ella a new type of food to try (her current formula is intended for infants versus toddlers). So we are hoping that we get to try food tomorrow. We know that it will be a slow drip via the food pump. From there, they will look to see how Ella tolerates food. Assuming that we don’t run into any issues, I think we might be discharged on Friday or Saturday.

Without food and being a bit dehydrated, her oxygen requirements are lower. They’ve almost lowered to her baseline of 750ccs during the day and 500ccs at night. We’re really excited about this because it was concerning to have her requirements so high. We never thought about a relationship between food and her oxygen requirements. But if the intestines/bowels are in fact “stressed” and too full, it can cause pressure on the diaphragm and make it tough to breathe. Who knew that food would potentially impact her oxygen requirements?

Aside from this, Ella has been in a great mood all day. We were able to get a long line for her oxygen and pulled her over to the blowup bed to play with her. Then, she fell asleep and took a nap on Daddy.

All in all, everything is going great. We’re just so happy that she does not need surgery. If you’re going to have a partial bowel obstruction, this is the kind you want. The type where the intestines are still healthy and there are no adhesions. So basically once you get rid of the build-up of stool, you are good to go! And we hope that we can learn of something new to give her to help further with motility, so we can avoid this type of backup in the future. I’m thinking positive but things could still change once we introduce food.

As I was typing this post, the doc came in to discuss next steps. He took a look at her xrays from this morning and determined that she still needs to be cleared out. Since her labs look good, we are getting another enema this evening (possibly even another enema in the morning) along with another set of abdominal xrays in the morning. We’re hoping this gives us the ticket to proceed with food tomorrow.

I read this passage in my devotional and it hit home:

This is my doing (1 Kings 12:24).

The disappointments of life are simply hidden appointments of love.

My child, I have a message for you today. Let me whisper it in your ear so any storm clouds that may arise will shine with glory, and the rough places you may have to walk will be made smooth. It is only four words, but let them sink into your inner being, and use them as a pillow to rest your weary head. “This is my doing”.

Have you ever realized that whatever concerns you concerns me too? “For whatever touches you touches the apple of my eye” (Zech 2:8). “You are precious in my sight” (Isaiah 43:4). Therefore it is my special delight to teach you.

I want you to learn that when temptations attack you, and the enemy comes in “like a pent-up flood” (Isaiah 59:19), that “This is my doing” and that your weakness needs My strength, and your safety lies in letting Me fight for you.

Are you in difficult circumstances, surrounded by people who do not understand you, never ask your opinion, and always push you aside? “This is my doing”. I am the God of circumstances. You did not come to this place by accident – you are exactly where I meant for you to be.

Have you not asked Me to make you humble? Then see that I have placed you in the perfect school where this lesson is taught. Your circumstances and the people around you are only being used to accomplish My will.

Are you having problems with money, finding it hard to make ends meet? “This is my doing”, for I am the One who keeps your finances, and I want you to learn to depend upon Me. My supply is limitless and I “will meet all your needs” (Phil 4:19). I want to prove My promises so no one may say, “You did not trust in the LORD your God” (Deut 1:32).

Are you experiencing a time of sorrow?” This is my doing”. I am a “man of sorrows, and familiar with suffering” (Isaiah 53:3). I have allowed your earthly comforters to fail you, so that by turning to Me you may receive “eternal encouragement and good hope” (2 Thessalonians 2:16). Have you longed to do some great work for Me but instead have been set aside on a bed of sickness and pain? “This is my doing”. You were so busy I could not get your attention, and I wanted to teach you some of My deepest truths. “They also serve who only stand and wait”. In fact, some of My greatest workers are those physically unable to serve, but who have learned to wield the powerful weapon of prayer.

Today I place a cup of holy oil in your hands. Use it freely, My child. Anoint it with every new circumstance, every word that hurts you, every interruption that makes you impatient, and every weakness you have. The pain will leave as soon as you learn to see Me in all things.

We’ve spent all day trying to get Ella cleared out.

This morning, we had another enema. This was her third one so far. Unfortunately, it did not do much (similar to the other two). So when the doctors rounded this morning, we discussed being a bit more aggressive. About 11am, we started to give her Pedialyte via g-tube as well as the IV drip, working towards getting her off the IV drip. Each hour, we increased the Pedialyte and decreased the IV drip. By 5pm, we were transitioned off the IV drip and taking only Pedialyte via g-tube. Actually, we’re surprised that the IV has lasted this long (we’ve had to save it twice because Ella moves around so much now that she kicks it out!).

Along with the Pedilayte, the doctors ordered MiraLAX (MiraLAX draws water back to the colon, replacing what was lost, and allows normal, easy and complete bowel movements. As it works, it provides more comfort and less straining without uncomfortable side effects). As I type this post, Ella has had 2 doses of MiraLAX. So far, no bowel movements. We’re just trying to clear her out from both ends and give her intestines a true break. Once we are convinced she is cleared out, they will verify via xray.

At this point, I think we might be here until Saturday or Sunday, if we don’t hit any major bumps along the road. Our hope is to get her cleared out and start food some time tomorrow. In the meantime, Ella is still managing to smile.

Psalm 33:4-5 (NIV)
For the word of the LORD is right and true;
he is faithful in all he does.

The LORD loves righteousness and justice;
the earth is full of his unfailing love.

Ella made some great progress today.

First, the IV did not make it overnight. That wasn’t a big deal because we were no longer using the IV drip. So for me, it just meant that we could take out the IV this morning and make the Bun more comfortable. Also, this morning because the IV was gone, we were able to give Ella a bath. It is the first time that Ella has ever used the hospital bathtub. During prior hospital visits, she was much younger and we were still using an infant/toddler bath. So that was a fun time cleaning her up since it had been 5 days since her last bath! Her curly hair appreciated it too!

At 8:15am, we saw the first stool. Afterwards, they administered another enema. This time, the combination of MiraLAX (she had two doses yesterday and three doses today) plus the enemas helped move things along further. By noon, she had passed a good amount of stool…enough stool that they were confident starting Ella on food.

The dietician came up with a food plan after consulting with the pediatrician. It is a 1:1 mixture of “30k/cal EleCare” (her current food) and “Nutren Jr with Fiber” (our goal). So by 3pm, we gave her first bolus of food, 60ml of formula +120ml of water. Within ten minutes, Ella was up crawling around the bed. So I definitely think that she was not experiencing any discomfort. The second feed at 6pm was 110ml of formula +120ml of water. Again she did well with this feed, however, her stools became very loose. The plan was to give her a fourth dose of MiraLAX tonight, but asked to hold off and start with further dosing in the morning.

As I type this, I just gave her the 9pm feed which was 160ml of formula +75ml of water. She seemed to take it fine. About 10 minutes later, she had another round of runny stool. Right now, she is crawling around the crib and watching a video. She does not seem like she is experiencing any pain or discomfort.

For now, we will not feed her all night and start again at 9am (just like our routine at home). Finally, her last two feeds for this test will be 9am and 12noon tomorrow, both with 200ml of formula + 75ml of water. If she passes this feeding test, they will want us to try feeding her 200ml of Nutren Jr with Fiber (no more EleCare), 5x/day followed by a 75ml flush of water each time. This process will take another 24 hours taking us into Sunday afternoon. If we get through this food transition on her normal bolus feed schedule and Ella is still doing well, they will let us go home! Part of this test will also be figuring out the right amount of MiraLAX to give her, so that we keep her cleared out but we don’t have constant diarrhea.

Thanks for all the support and prayers. We’re so thankful that Ella is doing well, better than we had ever hoped. We give Him all the praise and glory for bringing us through this time.

Psalm 46:5 (NASB)
God is in the midst of her, she will not be moved; God will help her when morning dawns.

Ella completed her first round of food tests with flying colors. After each feed, she was happy and crawling around the crib within minutes. We take this to mean that she is not experiencing any pain or discomfort.

With it being Saturday, the staff changed and that created a bit of a kink in the forward movement of things. The nurse was not sure if the doctors wanted her to have the morning dose of MiraLAX. I wasn’t sure either, so we skipped it. When they did rounds, it was decided that they wanted another set of abdominal xrays. They wanted to see if her colon was still full. The results of the xrays did show that the lower portion that was full the other day had emptied. However, it did show that the upper portion of her colon was full and also contained some air pockets. From here, they determined that she does need a motility aid like MiraLAX and recommends that we have her on some amount of it each day. For now, they are going to try 2x/day, to see if that is the sweet spot. If you remember, she took it 3x yesterday and her stool was too loose.

So, we gave the first dose of MiraLAX at 12:30pm. By the time 6pm rolled around, still no stool. I’ve heard Ella passing gas here and there, but no stool up to this point.

At 3:30pm, we started our new food plan (the one we want to use for the coming days). We gave her 200ml of Nutren Jr with Fiber plus 75mls of water. She took it without issue. This really tells us a lot. First of all, she has not tolerated that type of bolus volume before today. Even in the past, like last summer, we tried to combine feeds at the time and increase to this type of volume per feed, and ran into issues. She would complain and show signs of pain. At the time, we just thought it was gastric emptying and re-initiated her Reglan medicine. In retrospect, her bowels have likely been slower than normal this entire time and could have used a motility aid. I guess having a complete backup experience just made it come to light.

And I have never connected the feeding discomfort with a major increase in oxygen. Right now, she is sitting in her bed watching a video on .5 liter (we were on 1.5 liters when we were admitted last Tuesday). That is amazing!

We’ve been blessed this round. Although we have spent several days in the hospital, we arrived thinking she might have to undergo major surgery plus her oxygen requirement was so high that we were convinced she might be having issues with the stents. Thankfully, neither occurred. Plus, we have been able to transition to a different food and uncovered a symptom that has likely been causing some discomfort for quite some time.

I just fed her at 9:30pm – it was the third feed of the new food plan with Nutren Jr with Fiber. I’m happy to report that she has tolerated the bolus feeds with the new food like a champ. No complaining at all. Plus, about 9:45pm, I discovered poop! I was never so elated to change a poopy diaper. This means that since her bowels are functioning and she has tolerated the new food, there is a good chance that we might be able to go home later tomorrow.

We’re hoping for a restful night’s sleep with 2 more successful feeds at 9am and 12 noon. From there, it will be interesting to hear if they want to keep us or let us go home.

Ella woke up in a good mood and did another poop for us! This was right after the docs came in to discuss discharge. We were elated! We made it home from the hospital just in time to start watching an amazing Superbowl game. It was nice to watch the game in the comfort of our own home. However, watching it aired from Miami with 60 degree weather at 7pm EST made us jealous considering the snowy weather we’ve had today in Denver!

Since we’ve been home, we’ve had 3 uneventful feeds and more poop. All in all, it seems like her system is cleared out and has started functioning more optimally. Heck, she is doing better than ever before with feeds. Twice tonight, she would start the feed laying down and would begin to sit up and crawl while I was trying to bolus feed her. Also, she used to whine and fuss when she would see me approach with the syringe (indicating that she was not looking forward to it). Now, she doesn’t say anything – – it’s so nice.

As stated before, we were in the hospital nearly a week but it gained us HUGE progress forward for Ella. In our book, that’s a touchdown!