Ella had another rough night.

This time, it seems like the continuous feed was not really the issue. She needed to be vented a few times, but otherwise tolerated the Alimentum 20 calorie formula. But at 3:30am, she became fussy and not consolable. This lasted until this morning. Finally, at 9am when the java hit my bloodstream, I was happy that another day had arrived.

During rounds, we discussed the Care Conference. It is scheduled for tomorrow at 2pm. This is where the head doctors from different specialties come together for a meeting to discuss the milestones for the patient. Right now, we feel this is necessary to determine the common, long term care goals for Ella.

Also, we will be openly discussing the proposition from Dr. Fagan to undergo another heart catheter procedure and try to stint open Ella’s superior vena cava. Although there are no guarantees that he will be successful and we do not know of the outcome for her, there is also a chance that it could be a really good thing to help with her overall fluid and pressures related to her heart and lungs. If we’re lucky, it could also help with her body’s ability to absorb/regulate fluid and minimize the back up into her lungs.

Ella is now up to her full dosage of Aldactazide. She did urinate more today which is a good sign. Her face still looks a tad puffy and she is still battling upper airway congestion. Tomorrow morning, she has labs scheduled at 8am. They will take a BMP and also test her thyroid and adrenal gland levels. They want to rule out any hormonal differences playing into her high heart rate.

Speaking of a beating heart, it seemed like it was getting a tad lower this evening. We will have to watch it throughout tonight and tomorrow morning. It might be the increased dosage of sildenafil helping out. In the past, the sildenafil definitely helped bring down her heart rate. We’ll just have to see.

Yes, I know the title of the post is strange, but we are walking on not-so-thin ice these days, relatively speaking.

One year ago today, Ella was at the height of her chylothorax in the NICU on the 69th day of her life. She was dancing on the edge. We named the title of our post “Thin Ice”.

And although we are sitting in the hospital one year later, Ella is in a totally different place. We are still dealing with “fluid” issues and her overall health. But look at a glance of today versus just one year ago.

James 1:2-4 (The Message)
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

God is so good and has blessed us tremendously with Ella Renae. Yes, it is tough. It wears on us, some days more than others. But his Word tells us to consider it a gift when we are challenged.

Lord, as we head into another day at the hospital, we seek you and praise you for another day with Ella. We ask for your will to be done in our lives. We thank you for all the blessings you have bestowed upon us. Give all the doctors wisdom to make the right decisions for Ella’s long term care. Help us to discern which decisions for Ella are in your plan. We thank you for how far you have brought Ella and for the work you continue to do with her life. In Jesus’ Name, Amen.

Ella had another rough night.

This time, it seems like the continuous feed was not really the issue. She needed to be vented a few times, but otherwise tolerated the Alimentum 20 calorie formula. But at 3:30am, she became fussy and not consolable. This lasted until this morning. Finally, at 9am when the java hit my bloodstream, I was happy that another day had arrived.

During rounds, we discussed the Care Conference. It is scheduled for tomorrow at 2pm. This is where the head doctors from different specialties come together for a meeting to discuss the milestones for the patient. Right now, we feel this is necessary to determine the common, long term care goals for Ella.

Also, we will be openly discussing the proposition from Dr. Fagan to undergo another heart catheter procedure and try to stint open Ella’s superior vena cava. Although there are no guarantees that he will be successful and we do not know of the outcome for her, there is also a chance that it could be a really good thing to help with her overall fluid and pressures related to her heart and lungs. If we’re lucky, it could also help with her body’s ability to absorb/regulate fluid and minimize the back up into her lungs.

Ella is now up to her full dosage of Aldactazide. She did urinate more today which is a good sign. Her face still looks a tad puffy and she is still battling upper airway congestion. Tomorrow morning, she has labs scheduled at 8am. They will take a BMP and also test her thyroid and adrenal gland levels. They want to rule out any hormonal differences playing into her high heart rate.

Speaking of a beating heart, it seemed like it was getting a tad lower this evening. We will have to watch it throughout tonight and tomorrow morning. It might be the increased dosage of sildenafil helping out. In the past, the sildenafil definitely helped bring down her heart rate. We’ll just have to see.

Yes, I know the title of the post is strange, but we are walking on not-so-thin ice these days, relatively speaking.

One year ago today, Ella was at the height of her chylothorax in the NICU on the 69th day of her life. She was dancing on the edge. We named the title of our post “Thin Ice”.

And although we are sitting in the hospital one year later, Ella is in a totally different place. We are still dealing with “fluid” issues and her overall health. But look at a glance of today versus just one year ago.

James 1:2-4 (The Message)
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

God is so good and has blessed us tremendously with Ella Renae. Yes, it is tough. It wears on us, some days more than others. But his Word tells us to consider it a gift when we are challenged.

Lord, as we head into another day at the hospital, we seek you and praise you for another day with Ella. We ask for your will to be done in our lives. We thank you for all the blessings you have bestowed upon us. Give all the doctors wisdom to make the right decisions for Ella’s long term care. Help us to discern which decisions for Ella are in your plan. We thank you for how far you have brought Ella and for the work you continue to do with her life. In Jesus’ Name, Amen.

Ella did not sleep last night.

The Alimentum 20 calorie food went in a bit better and did not give as much tummy trouble, although she had a lot of gas. Each time I fed her, it required multiple times of venting. Also, she still was waking up retching on her own airway secretions throughout the night.

For food, they wanted Ella to try Alimentum 26 calorie since this is the food she ate before surgery. Unfortunately, she did not tolerate it. It gave the same symptoms as the Peptamen Jr – tummy pain and lots of back up including large amounts of bile. I think it is still too dense for her. When we switched back to the Alimentum 20 calorie formula this afternoon, she tolerated it much better.

We have been bolus feeding her 2 times overnight. Tonight, we are going to try and go back to a continuous feed overnight (180ccs for 6 hours; rate of 30ccs per hour). Back at home, she was on a continuous feed overnight before and we are hoping that she will tolerate it since it is only 20 calorie Alimentum. This is what we would like to go back to doing for a home regimen, so we hope it works.

By 6pm tonight, the pulmonology team opted to increase her dosage of the Aldactazide diuretic to the most it can be. We are hoping that it is enough to put Ella in a good place. The next 24 hours will be telling. If not, they will have to look to add the Bumex (a loop diuretic) back into her regimen. Because she has calcium deposits on her kidneys, they are trying to not use Bumex.

There were times that Ella seemed really happy and herself today. Yet, there were other times that she was in pain or simply did not feel well. It was a roller coaster type of day. When the times were good, we tried to take advantage of them.

Kelly the nanny spent the day with us at the hospital. We figured it would be good for Ella to start seeing her on a regular basis and I can start with teaching her about Ella and her care. Most of the time, Ella exhibits stranger anxiety. Today with Kelly, she did not act much different. That was a fun, positive experience for Ella.

Another noteworthy item: I placed Ella’s hair in pony tails today! It was a fun change of pace. Her hair is finally getting long enough and I finally bought some special rubberbands the other day that work great with fine hair. I think she knew that her hair was sassy!

At this point, the doctors are running out of ideas. Please pray for God’s wisdom and guidance in the decisions that need to be made in the coming days.

We really desire for Ella to be discharged from the hospital, but know that He has a plan and that His timing is perfect.

Ella did not sleep last night.

The Alimentum 20 calorie food went in a bit better and did not give as much tummy trouble, although she had a lot of gas. Each time I fed her, it required multiple times of venting. Also, she still was waking up retching on her own airway secretions throughout the night.

For food, they wanted Ella to try Alimentum 26 calorie since this is the food she ate before surgery. Unfortunately, she did not tolerate it. It gave the same symptoms as the Peptamen Jr – tummy pain and lots of back up including large amounts of bile. I think it is still too dense for her. When we switched back to the Alimentum 20 calorie formula this afternoon, she tolerated it much better.

We have been bolus feeding her 2 times overnight. Tonight, we are going to try and go back to a continuous feed overnight (180ccs for 6 hours; rate of 30ccs per hour). Back at home, she was on a continuous feed overnight before and we are hoping that she will tolerate it since it is only 20 calorie Alimentum. This is what we would like to go back to doing for a home regimen, so we hope it works.

By 6pm tonight, the pulmonology team opted to increase her dosage of the Aldactazide diuretic to the most it can be. We are hoping that it is enough to put Ella in a good place. The next 24 hours will be telling. If not, they will have to look to add the Bumex (a loop diuretic) back into her regimen. Because she has calcium deposits on her kidneys, they are trying to not use Bumex.

There were times that Ella seemed really happy and herself today. Yet, there were other times that she was in pain or simply did not feel well. It was a roller coaster type of day. When the times were good, we tried to take advantage of them.

Kelly the nanny spent the day with us at the hospital. We figured it would be good for Ella to start seeing her on a regular basis and I can start with teaching her about Ella and her care. Most of the time, Ella exhibits stranger anxiety. Today with Kelly, she did not act much different. That was a fun, positive experience for Ella.

Another noteworthy item: I placed Ella’s hair in pony tails today! It was a fun change of pace. Her hair is finally getting long enough and I finally bought some special rubberbands the other day that work great with fine hair. I think she knew that her hair was sassy!

At this point, the doctors are running out of ideas. Please pray for God’s wisdom and guidance in the decisions that need to be made in the coming days.

We really desire for Ella to be discharged from the hospital, but know that He has a plan and that His timing is perfect.

I stayed at the hospital last night so Tina could get a solid nights rest at home. Ella woke up about every 45 minutes last night. The first couple times were related to food, and I think the others times of restlessness were more caused by her elevated heart rate of 170bpm at rest.

Ella continued to have problems with her feeds…a combination of Peptamin Jr and Pedialyte. She’s been very gassy, both from her G-Tube and from a toot factor…and man, her toots will knock you over. I also sense that she’s uncomfortable even during the feed. Typically within 25-35 minutes of when her feed has completed, she has a meltdown related to discomfort. Some pain is alleviated when the gas escapes, but not completely.

At her three o’clock feed she had a MAJOR meltdown. On a scale of one to ten, she was an eleven and this went on for 20 minutes. I called the resident doc to come in and look at her so he could see just how much this food was affecting her. My gut keeps telling me that it’s the food. So at this point, I want them to change this because this has been going on for way to long (a few weeks now) and I’m tired of us torturing our kid this way.

Ella has also been pushing up a bunch of bile during these episodes while were venting her G-Tube. I had shown this to other nurses and docs in the past, but the didn’t seem too overly concerned. I always like a double check on this because we were told in the NICU at Shands that if Ella ever starts pushing up dark green fluid, there’s a good chance she has an obstruction in her intestines.

Well the doc who was on today seemed a bit more concerned. So much so that he ordered a three panel xray of her gut to check for any problems. He also wanted to check her potassium because if it gets too low, it could affect the motility in her intestines.

After talking it over with Tina, I also asked if we could switch her back to Alimentum (even just the 20 calorie version) for the next few feeds to see how she tolerates it. If she handles it well, it confirms that it’s the food. At this moment, she is sleeping comfortably, and I gave her a feed of Alumentum 45 minutes ago. She had no problem taking the feed, and she’s shown no signs of distress since. Here’s hoping this continues through the rest of the night.

I’ve not heard anything regarding her lower GI xrays, and I assume no news is good news here. Her labs came back though, and her potassium was in the middle (3), so that was good. Her BUN on the other hand was 15, which is amazing because 8 weeks ago, she would have been in pretty bad respiratory distress with this kind of number. This confirms in my mind that the Captopril is doing something.

Even before seeing her BUN we’d been telling the docs that Ella still seems a bit too wet. Her clinical behaviors and increased upper airway congestion indicate to us that this is the case. The docs here feel that, moving forward, she’d be better off being a little more over dirareased, which is something we’ve known as long as we’ve known Ella . With that thought they administered a single dose of Bumex (1.5mg) and took a chest xray to confirm the fluid levels in her lungs. They also increased her Aldacdizde, the thiazide diuretic (non-loop), which will hopefully allow her to level off into a balanced fluid state.

Besides all that…I’m exhausted.

5 weeks and one day in the hospital and I be lying to you if I said it didn’t suck in a lot of ways. If you have a kid, think about the time when your kid was real sick, and you were up with them all night ’cause they were puking. Then, your kid starts puking so hard that they can’t catch their breath, then they turn blue and almost pass out. Maybe you had to do that for 3 or 4 days. Now…try that scenario for 5+ weeks and on top of that, live out of a hospital, watch your kid get needles stuck into their feet, head, hands, multiple times AND have a different set of doctors with different opinions who need to really “practice” their medicine because your kid is not very straightforward and seems to not respond to any “typical” treatments.

And for Tina…multiply what I said above by at least 10 because she deals with it most of the time!

I share the snippet of reality above so that I can share this…

As much as this sucks…God’s blessing has been 100 times greater!

To have this amazing child in our lives and to see so many lives touched by her,
to see the Lord’s hand at work in so many ways,
to share Ella’s story and have people recognize and see the power of God at work,
to have people on their knees, lifting us and our sweet child up in prayer,
to draw more closely into an intimate relationship with Jesus…

THESE THINGS MAKE…

every needle,
every retch,
every sleepless hour,
every procedure,
every surgery,
every moment of anxiety,
every shortness of breath,
every tear shed…

…worth it.

God is so Awesome…We Praise Him for endless supply of mercy, love, and grace.

Oh…and speaking of how awesome God is…

Ella’s Nanny (Kelly) is now up here in Denver, helping us with the move and learning about Ella’s care. Kelly’s comments on our blog are just a small taste of what an amazing woman of God she is. We spent a couple hours in the car yesterday, driving up from Colorado Springs. Every moment we’re with her just continues to affirm how much she’s supposed to be in our lives. Thank you Lord for blessing our family with this sweet, obedient, servant of yours!

And Lord…thank you for blessing us with Ella Renae.

I stayed at the hospital last night so Tina could get a solid nights rest at home. Ella woke up about every 45 minutes last night. The first couple times were related to food, and I think the others times of restlessness were more caused by her elevated heart rate of 170bpm at rest.

Ella continued to have problems with her feeds…a combination of Peptamin Jr and Pedialyte. She’s been very gassy, both from her G-Tube and from a toot factor…and man, her toots will knock you over. I also sense that she’s uncomfortable even during the feed. Typically within 25-35 minutes of when her feed has completed, she has a meltdown related to discomfort. Some pain is alleviated when the gas escapes, but not completely.

At her three o’clock feed she had a MAJOR meltdown. On a scale of one to ten, she was an eleven and this went on for 20 minutes. I called the resident doc to come in and look at her so he could see just how much this food was affecting her. My gut keeps telling me that it’s the food. So at this point, I want them to change this because this has been going on for way to long (a few weeks now) and I’m tired of us torturing our kid this way.

Ella has also been pushing up a bunch of bile during these episodes while were venting her G-Tube. I had shown this to other nurses and docs in the past, but the didn’t seem too overly concerned. I always like a double check on this because we were told in the NICU at Shands that if Ella ever starts pushing up dark green fluid, there’s a good chance she has an obstruction in her intestines.

Well the doc who was on today seemed a bit more concerned. So much so that he ordered a three panel xray of her gut to check for any problems. He also wanted to check her potassium because if it gets too low, it could affect the motility in her intestines.

After talking it over with Tina, I also asked if we could switch her back to Alimentum (even just the 20 calorie version) for the next few feeds to see how she tolerates it. If she handles it well, it confirms that it’s the food. At this moment, she is sleeping comfortably, and I gave her a feed of Alumentum 45 minutes ago. She had no problem taking the feed, and she’s shown no signs of distress since. Here’s hoping this continues through the rest of the night.

I’ve not heard anything regarding her lower GI xrays, and I assume no news is good news here. Her labs came back though, and her potassium was in the middle (3), so that was good. Her BUN on the other hand was 15, which is amazing because 8 weeks ago, she would have been in pretty bad respiratory distress with this kind of number. This confirms in my mind that the Captopril is doing something.

Even before seeing her BUN we’d been telling the docs that Ella still seems a bit too wet. Her clinical behaviors and increased upper airway congestion indicate to us that this is the case. The docs here feel that, moving forward, she’d be better off being a little more over dirareased, which is something we’ve known as long as we’ve known Ella . With that thought they administered a single dose of Bumex (1.5mg) and took a chest xray to confirm the fluid levels in her lungs. They also increased her Aldacdizde, the thiazide diuretic (non-loop), which will hopefully allow her to level off into a balanced fluid state.

Besides all that…I’m exhausted.

5 weeks and one day in the hospital and I be lying to you if I said it didn’t suck in a lot of ways. If you have a kid, think about the time when your kid was real sick, and you were up with them all night ’cause they were puking. Then, your kid starts puking so hard that they can’t catch their breath, then they turn blue and almost pass out. Maybe you had to do that for 3 or 4 days. Now…try that scenario for 5+ weeks and on top of that, live out of a hospital, watch your kid get needles stuck into their feet, head, hands, multiple times AND have a different set of doctors with different opinions who need to really “practice” their medicine because your kid is not very straightforward and seems to not respond to any “typical” treatments.

And for Tina…multiply what I said above by at least 10 because she deals with it most of the time!

I share the snippet of reality above so that I can share this…

As much as this sucks…God’s blessing has been 100 times greater!

To have this amazing child in our lives and to see so many lives touched by her,
to see the Lord’s hand at work in so many ways,
to share Ella’s story and have people recognize and see the power of God at work,
to have people on their knees, lifting us and our sweet child up in prayer,
to draw more closely into an intimate relationship with Jesus…

THESE THINGS MAKE…

every needle,
every retch,
every sleepless hour,
every procedure,
every surgery,
every moment of anxiety,
every shortness of breath,
every tear shed…

…worth it.

God is so Awesome…We Praise Him for endless supply of mercy, love, and grace.

Oh…and speaking of how awesome God is…

Ella’s Nanny (Kelly) is now up here in Denver, helping us with the move and learning about Ella’s care. Kelly’s comments on our blog are just a small taste of what an amazing woman of God she is. We spent a couple hours in the car yesterday, driving up from Colorado Springs. Every moment we’re with her just continues to affirm how much she’s supposed to be in our lives. Thank you Lord for blessing our family with this sweet, obedient, servant of yours!

And Lord…thank you for blessing us with Ella Renae.

This was the message on the dry erase board as we entered our new room upstairs. Yes, we moved out of the ICU – thank goodness! Four days of the intensive care unit was enough of a taste for me. Admittedly, it was nice to have the attentiveness of a nurse all the time. But the privacy was so lacking. We are glad to be upstairs again, although we lost our view of the mountains. Bummer!

Last night was a tough one. Ella was literally up every 30 minutes. The night seemed to last forever. Along with retching, she was having lots of gas and tummy trouble. That discomfort has lasted throughout today. While she was up all night, I had no idea that the nurse had weened her oxygen down to 500ccs. It explains why Ella may have been more fussy throughout the night and why she seemed uncomfortable. To avoid this, there are specific instructions to titrate upwards but to not wean the oxygen.

Today, she has been stable on 1 liter. Later in the day, I noted that she was breathing faster at around 75 breaths per minute and her saturations had lowered to the high 80s and low 90s. I asked the PICU docs to take a look and listen to her; it seemed like she might be a bit wet. They ordered a chest xray and afterward, opted to give her a dose of Bumex. As time passed and so did her urine, she seemed to be oxygenating better.

I feel like they keep having to chase her symptoms with more Bumex. I know this is a fine tuning process, but I think it is pretty clear that her current dose of diuretic is not sufficient to keep her in a good place.

The pulmonology team mentioned getting a consult with endocrinology on Monday. Another thought for her elevated heart rate might be an imbalance with the thyroid and/or adrenal gland. It would mean more tests, but it can certainly eliminate doubt and guessing.

Another thought that keeps coming to mind is the food she just switched to: Peptamen Jr. I think it is causing her a lot of tummy trouble, especially now that we tried to change the density of the food over the last few days. Also, I just found out that the MCT/LCT ratio of Peptamen Jr. is (medium-chain triglyceride/long chain triglyceride) is 60:40. In the past, Ella required foods that are close to 100% MCT. The medium-chain triglyeride foods help with fat absorption. Her inability to process fats in her foods does contribute to her overall fluid issue (if you remember, she could not tolerate breast milk due to the fats either).

Ella’s dose of sildenafil went back up tonight to 7mg, three times per day. Tomorrow morning, the plan is to increase it to 8mg, three times per day. It will be interesting to see what the coming days bring as far as the best meds and food to treat Ella long term. We are hoping that we can arrange a Care Conference early next week so we can discuss all the viable options.

Josh is going to watch Ella at the hospital tonight so I can go home and get some real shut eye. I’m very excited at the idea of sleeping. And just glancing at Ella’s picture below makes me want to yawn.

This was the message on the dry erase board as we entered our new room upstairs. Yes, we moved out of the ICU – thank goodness! Four days of the intensive care unit was enough of a taste for me. Admittedly, it was nice to have the attentiveness of a nurse all the time. But the privacy was so lacking. We are glad to be upstairs again, although we lost our view of the mountains. Bummer!

Last night was a tough one. Ella was literally up every 30 minutes. The night seemed to last forever. Along with retching, she was having lots of gas and tummy trouble. That discomfort has lasted throughout today. While she was up all night, I had no idea that the nurse had weened her oxygen down to 500ccs. It explains why Ella may have been more fussy throughout the night and why she seemed uncomfortable. To avoid this, there are specific instructions to titrate upwards but to not wean the oxygen.

Today, she has been stable on 1 liter. Later in the day, I noted that she was breathing faster at around 75 breaths per minute and her saturations had lowered to the high 80s and low 90s. I asked the PICU docs to take a look and listen to her; it seemed like she might be a bit wet. They ordered a chest xray and afterward, opted to give her a dose of Bumex. As time passed and so did her urine, she seemed to be oxygenating better.

I feel like they keep having to chase her symptoms with more Bumex. I know this is a fine tuning process, but I think it is pretty clear that her current dose of diuretic is not sufficient to keep her in a good place.

The pulmonology team mentioned getting a consult with endocrinology on Monday. Another thought for her elevated heart rate might be an imbalance with the thyroid and/or adrenal gland. It would mean more tests, but it can certainly eliminate doubt and guessing.

Another thought that keeps coming to mind is the food she just switched to: Peptamen Jr. I think it is causing her a lot of tummy trouble, especially now that we tried to change the density of the food over the last few days. Also, I just found out that the MCT/LCT ratio of Peptamen Jr. is (medium-chain triglyceride/long chain triglyceride) is 60:40. In the past, Ella required foods that are close to 100% MCT. The medium-chain triglyeride foods help with fat absorption. Her inability to process fats in her foods does contribute to her overall fluid issue (if you remember, she could not tolerate breast milk due to the fats either).

Ella’s dose of sildenafil went back up tonight to 7mg, three times per day. Tomorrow morning, the plan is to increase it to 8mg, three times per day. It will be interesting to see what the coming days bring as far as the best meds and food to treat Ella long term. We are hoping that we can arrange a Care Conference early next week so we can discuss all the viable options.

Josh is going to watch Ella at the hospital tonight so I can go home and get some real shut eye. I’m very excited at the idea of sleeping. And just glancing at Ella’s picture below makes me want to yawn.

Ella was wheeled down to the cath lab at 11am this morning. The procedure itself didn’t get started until around 12:20pm. Tina was able to go into the room with her while the anesthesiologist put her to sleep with some gas.

The doctor performing the heart cath mentioned that he may want to balloon open some veins (possibly her SVC) and could potentially use a stent to keep it open.

I just received a call (1:20pm) from the nurse practitioner letting me know that they were able to get access right away (Praise God!) and they were already testing the pressures in her heart.

At the moment, Tina and I are both outside soaking in the beautiful weather. I’m here escaping into work and she’s taking some alone time to make some calls.

We’ll post updates as the details come in from the procedure. Thank you for continuing to lift us all up in prayer.

Thank you Jesus for this beautiful day. We praise you for the gift of life, and the miracles you’ve performed in the hearts of many through our precious daughter. We ask that you give revelation to the doctors through this procedure, enabling them to more effectively treat our girl. Father, keep her safe. We pray for no complications and for stability during and after the procedure. We completely surrender and trust in you Lord. Praise you Jesus. Amen.

UPDATE 5:45pm MST (by Tina):
Ella was been stable throughout her entire procedure – praise God. She was in the procedure for about 4 hours. As Josh stated before, they had no problem getting access through her right leg. They weaved the catheter up to her heart and began to test the pressures and look at the anatomy of her heart and lungs.

The good news is that most of the major concerns with her heart were alleviated. The pressures in the different chambers were not normal, but not nearly as bad as they expected. They did confirm her pulmonary hypertension is moderate and on the arterial side. They feel that the sildenafil and captopril medicines play a huge role in keeping her stable.

Also, they were looking for 2 other potential major problems: narrowing/blockage of the veins in her lungs – those were not present. Her right lung looks good and although her left lung is smaller, both appear to be functionally working. Both have evidence of chronic lung disease with some abnormalities, but there was no narrowing of the veins coming from the lungs into the heart. Another concern was the pressures in her heart. Yet, when they gave her nitric oxide and more oxygen, she responded favorably and the pressures came near to normal.

They’ve confirmed that her SVC (superior vena cava) is completely occluded and cannot find veins on her right side going back into her heart. They are only able to see collateral veins that loop all over the right side of her body.

They were hoping that they might be able to get access in some way to the SVC so that they could try and balloon it open. They tried going into her right neck and her left neck, but did not have success at locating a place where they could balloon it open. When we looked at the images, literally there is no SVC going into Ella’s heart. The SVC is not just occluded; the opening to that part of her heart is closed off completely.

So doing the heart catheter certainly eliminated a lot of scary diagnosis that they thought she might have had going into the procedure. It told them which medicines are going to be the most effective in treating her. The plan for now is to increase her sildenafil dose to 6mg per kilo, three times per day to help with her pulmonary hypertension and increase the aldactazide diuretics to .75mg per kilo every 24 hours, divided into two doses. The plan is to watch her clinically and increase the meds as needed.

We are supposed to have another Care Conference soon to have everyone brainstorm about the best plan of action on a long term basis. Another thought: Dr. Fagan who did the procedure today took the time to show us all the images of the procedure. It was amazing to see the video clips of Ella’s heart, lung and collateral veins. Dr. Fagan thinks it might have more benefit than risk to schedule another heart catheter procedure to see if they can try to re-create the path from her heart through her SVC. If Ella’s body had that vessel open and provided another way to drain into her heart, it would likely relieve some of the pressure and it could be playing a huge role in her fluid sensitivity. If they could re-create the pathway of her SVC, they would likely place a stint to keep it open.

This is the same theory that Dr. Kays had about her fluid sensitivity. Back in Gainesville, he wanted us to consider the same type of procedure. However, the cardiology staff at Shands did not have an expertise for this type of procedure and they stressed how risky it would be for Ella, given her prognosis at the time. So, we held off.

Dr. Fagan can’t guarantee that he could get the path re-created, but he could try with minimal risk. If he does get the path re-created and places a stint, he can’t guarantee that it would resolve her problems. But on the other hand, it might. Something to consider for Ella.

The course for the next few days is to stay steady and play around with the same cocktail of medicines, trying to get Ella in a good place. I’m hoping that her Care Conference can be early next week and that we can talk about taking her home soon!

Thank you for the amazing outpouring of support and prayers. It meant so much to have people praying for all three of us today. We’re overwhelmed and overjoyed at everything He has done through this journey. We continue to trust and be in awe of the path He has chosen for us to follow.

Ella was wheeled down to the cath lab at 11am this morning. The procedure itself didn’t get started until around 12:20pm. Tina was able to go into the room with her while the anesthesiologist put her to sleep with some gas.

The doctor performing the heart cath mentioned that he may want to balloon open some veins (possibly her SVC) and could potentially use a stent to keep it open.

I just received a call (1:20pm) from the nurse practitioner letting me know that they were able to get access right away (Praise God!) and they were already testing the pressures in her heart.

At the moment, Tina and I are both outside soaking in the beautiful weather. I’m here escaping into work and she’s taking some alone time to make some calls.

We’ll post updates as the details come in from the procedure. Thank you for continuing to lift us all up in prayer.

Thank you Jesus for this beautiful day. We praise you for the gift of life, and the miracles you’ve performed in the hearts of many through our precious daughter. We ask that you give revelation to the doctors through this procedure, enabling them to more effectively treat our girl. Father, keep her safe. We pray for no complications and for stability during and after the procedure. We completely surrender and trust in you Lord. Praise you Jesus. Amen.

UPDATE 5:45pm MST (by Tina):
Ella was been stable throughout her entire procedure – praise God. She was in the procedure for about 4 hours. As Josh stated before, they had no problem getting access through her right leg. They weaved the catheter up to her heart and began to test the pressures and look at the anatomy of her heart and lungs.

The good news is that most of the major concerns with her heart were alleviated. The pressures in the different chambers were not normal, but not nearly as bad as they expected. They did confirm her pulmonary hypertension is moderate and on the arterial side. They feel that the sildenafil and captopril medicines play a huge role in keeping her stable.

Also, they were looking for 2 other potential major problems: narrowing/blockage of the veins in her lungs – those were not present. Her right lung looks good and although her left lung is smaller, both appear to be functionally working. Both have evidence of chronic lung disease with some abnormalities, but there was no narrowing of the veins coming from the lungs into the heart. Another concern was the pressures in her heart. Yet, when they gave her nitric oxide and more oxygen, she responded favorably and the pressures came near to normal.

They’ve confirmed that her SVC (superior vena cava) is completely occluded and cannot find veins on her right side going back into her heart. They are only able to see collateral veins that loop all over the right side of her body.

They were hoping that they might be able to get access in some way to the SVC so that they could try and balloon it open. They tried going into her right neck and her left neck, but did not have success at locating a place where they could balloon it open. When we looked at the images, literally there is no SVC going into Ella’s heart. The SVC is not just occluded; the opening to that part of her heart is closed off completely.

So doing the heart catheter certainly eliminated a lot of scary diagnosis that they thought she might have had going into the procedure. It told them which medicines are going to be the most effective in treating her. The plan for now is to increase her sildenafil dose to 6mg per kilo, three times per day to help with her pulmonary hypertension and increase the aldactazide diuretics to .75mg per kilo every 24 hours, divided into two doses. The plan is to watch her clinically and increase the meds as needed.

We are supposed to have another Care Conference soon to have everyone brainstorm about the best plan of action on a long term basis. Another thought: Dr. Fagan who did the procedure today took the time to show us all the images of the procedure. It was amazing to see the video clips of Ella’s heart, lung and collateral veins. Dr. Fagan thinks it might have more benefit than risk to schedule another heart catheter procedure to see if they can try to re-create the path from her heart through her SVC. If Ella’s body had that vessel open and provided another way to drain into her heart, it would likely relieve some of the pressure and it could be playing a huge role in her fluid sensitivity. If they could re-create the pathway of her SVC, they would likely place a stint to keep it open.

This is the same theory that Dr. Kays had about her fluid sensitivity. Back in Gainesville, he wanted us to consider the same type of procedure. However, the cardiology staff at Shands did not have an expertise for this type of procedure and they stressed how risky it would be for Ella, given her prognosis at the time. So, we held off.

Dr. Fagan can’t guarantee that he could get the path re-created, but he could try with minimal risk. If he does get the path re-created and places a stint, he can’t guarantee that it would resolve her problems. But on the other hand, it might. Something to consider for Ella.

The course for the next few days is to stay steady and play around with the same cocktail of medicines, trying to get Ella in a good place. I’m hoping that her Care Conference can be early next week and that we can talk about taking her home soon!

Thank you for the amazing outpouring of support and prayers. It meant so much to have people praying for all three of us today. We’re overwhelmed and overjoyed at everything He has done through this journey. We continue to trust and be in awe of the path He has chosen for us to follow.