Another good day for the Bun.

Tina and Kelly were up early to go to the opening of a Home Goods store, do some grocery shopping, and run some other errands. This left me alone to take care of our girl. Before they took off though, Tina snapped a few pictures of some visitors on our neighbors lawn.

Ella and I had a great time playing on her mat, cuddling, snuggling, and making each other smile. There were also a lot of funny faces and noises involved too. So great to have these times with my girl. I really try to soak them in, because I know her behaviors and times of feeling good tend to ebb and flow.

She handled her feeds well all day and she only needed to be vented once tonight.

Tina and Kelly didn’t get home ’till 6:30. About 30 minutes before they did, I had a bit of a scare with Ella. She was laying in her crib when she began to retch. I picked her up and she really seemed to be having trouble. I set her down real quick and ran over to the concentrator to increase her oxygen. I went back to pick her up and she couldn’t catch her breath.

While holding her, she arched back in a state of panic, but she couldn’t clear her airway. She was turning more blue, then she got real calm. She didn’t fully pass out but she looked dazed. Thoughts of CPR were racing through my head. She was breathing, but still struggling a bit. I was able to get her to drink which helped clear her out. It took her a few minutes for her color to return but it finally did. Man…these are not fun moments.

By the time Tina and Kelly got here, she was back to her smiley self, as if nothing happened. Glad to see it turn out this way…thanking God that it did.

Psalm 16:7-8 (New Living Translation)
I will bless the Lord who guides me;
even at night my heart instructs me.
I know the Lord is always with me.
I will not be shaken, for he is right beside me.

Thank you Lord for always being here with us…and thank you for our sweet child, Ella Renae.

Ella had a great day. She’s doing good on the 24cal food at a rate of 25ccs per hour. This has played a big part in her mood.

We tried feeding her some apples, but it didn’t go well. She’s definitely taken a step back in this area. There was a time when she’d open her mouth for more food, but now, she just melts down. It’s hard to see this backward progress, but Tina reminded me that we were here before, and she’ll come around again.

At this very moment, the Bun is asleep, and Tina, Kelly, and I are outside enjoying a mild October night in Colorado next to our fire pit.

I know there are many of you out there who don’t comment, but you do check us out almost every day. Thank you for keeping up with Ella’s progress and for all support.

but Ella is doing good =). Super Nanny Kelly was kind enough to take on watching Ella all day, and tonight in fact, so that Tina and I could finish up our move. It was a cold wet day in Denver, and we’re absolutely exhausted. I’m writing this at 1:30am local time, and Tina is asleep on the floor next to me.

The move is pretty much done except for some cleanup at the other house. We have a lot of unpacking and such to do at the “new” place though. I can’t believe how much we’ve been able to do in such a short amount of time, and really, credit is due to all the people who pitched in to help!

We’re still hoping that Ella will be discharged on Monday. If we’ve learned anything with Ella though, nothing is for sure.

Ella is working up to bolus feeds and continues to do well in this area. Hopefully the blood work we do in the coming days will just confirm what we’re seeing clinically…a happy, comfortable kid.

Going to wrap this up so we can get some sleep.

Enjoy the pictures of our sweet little Bun!

I spent last night with the Bun and I’ll be spending tonight in the hospital as well so Tina can try and catch up on some sleep. I don’t know how Tina does this 5 days a week. What an amazing wife I have…no doubt!

Overall, Ella has made some pretty big strides since we’ve been here. A doctor who hadn’t seen her in a few weeks confirmed this for us. I think seeing her every day can sometimes skew our perspective, so having an attending doc affirm her progress is encouraging.

Ella continues to tolerate her food, and did well with it through the night, but we’ll be holding her at the 26k/cal mark until Monday. They don’t want to push her too much.

I did have to wake the Bun up at 5 this morning. The reason…they needed to get IV access. The purpose was to try and balance out her cortisol levels that may have been impacted by the steroid regiment she was previously on. Obviously Ella was not too pleased about the prospect of this. She was even less pleased because they tried 4 times over an hour period to get access (twice in the hand and once in each foot) without success. This was pretty much 60 minutes of non-stop melt down for Ella with nothing to show for it. Not a fun time.

The nurse who attempted placing the IV noted that Ella’s veins were clotting very quickly. This made me think about the night docs concern regarding Ella being too dry intravascularly. Over the last few days, it has seemed to us that Ella was still too wet because of some of her clinical behaviors and her saturations. I asked if clotting was a sign of her being too dry, and the nurse confirmed that it could be.

Although they couldn’t get an IV, they did get enough blood to run a BMP. Everything was inline accept her BUN…which was 34! In the past we relied on this number heavily to give us an idea of where Ella was from a fluid standpoint…that, and her clinical behavior. With her new medicine regiment though, we’re going to have the change the way we interpret Ella’s previous clinical signs. We thought she might be too wet, when actually she was too dry!

This did seem weird to me that last Wednesday she had a BUN of 9 and three days later, it’s 34. After talking it through with a doc, it sounds like the increased protein in her new food could be pushing it higher too. Either way, she’s still too dry, so we held off on one dose of her diuretic (aldactizide) today.

The fact that she is too dry does have a silver lining: we were able to get her to this place without the use of any loop diuretics (Lasix or Bumex)! Moving forward, we should be able to balance Ella out with the current set of meds, at least that’s how I interpret it at this time.

We’ve been trying to ween Ella’s oxygen too. She tolerated 1 liter for awhile, but I had to bump her back up to 1.5 liters in the afternoon because she was saturating in the upper 80’s / low 90’s for about 30 mins. As of this evening though, we’re back on 1 liter.

The only thing a bit off about Ella is she can desaturate pretty quickly and she can be happy one minute and then upset the next. Not sure what to make of this, but hopefully this will settle down in the coming days.

Today marks six weeks in the hospital, and I’m hoping we don’t need to stretch it another week. Trusting in our Lord for the timing of being discharged. Even though we want to be home, I don’t want to rush His work either.

I did find some perspective in the elevator today. I rode up with a mom who’s 19 year old son is battling cancer. Wow…that hit me hard. Cancer at 19. I know that God only gives us what we can handle, but He will often stretch us to the very edge of our capacity. Faith is grown during these spiritual workouts. I’m just so thankful that He’s blessed us with 14+ months with Ella.

Praising God every day for this sweet little Bun.

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.

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.

At this moment, Tina and I are in total shock. God is so amazingly awesome! I mean, we’ve seen many miracles along this journey and it’s not that we’ve had any doubt in our Heavenly Father. Ella is living proof of His miraculous ways every day!!! What always blows my mind is how God orchestrates our lives. When we surrender our will back to Him in obedience, we can trust that He will work out all the details.

The last ten days have been filled with huge life changing events. Tina secured an incredible job opportunity that came to her last July (mind you, one that she didn’t originally pursue). We’re moving into the home we’ve been trying to rent for the last four months because our current residence rented in less than a week (hello clear direction from God)! And, as of tonight, we have been blessed to find the most FANTASTIC individual to be a part of our lives to help with Ella.

We have been praying for wisdom and discernment in finding the right nanny. There was no way Tina could perform her new job, and for me to continue mine without some help. We’ve not felt any prompting from God that I’m supposed to quit, and we’re confident that He didn’t provide this opportunity for Tina just so she could turn it down. This is where we had to trust Him because we didn’t know how He was going to work this out. We just knew that it was a major piece that had to fall into place.

And this particular decision is a huge one for us because we will be trusting this individual with the care of our precious Ella, something that we haven’t felt comfortable doing with anyone except the NICU nurses from Florida (which is why our last “date night” was when nurse Janet came out to visit over two months ago).

One option we were considering was an au pair, but after extensive research, we decided against this route due to Ella’s complexity and the likely possibility of a language barrier. This did push us towards having a live-in nanny though, which works because we’ll have more space in the house we’re moving back into.

Tina has been interviewing nannies over phone, some local and some out of state, and we asked a couple candidates if they wouldn’t mind coming to the hospital so we could interview them. We interviewed one yesterday, and based on her experience, she sounded like a possible match. But our gut and spirit quickly confirmed that she wasn’t a right fit for us.

The nanny that came to interview today, her name is Kelly, started out on the right foot before we had even met her in person. While talking to her on the phone, Tina had asked “What is your ideal situation for being a nanny?”. Tina was expecting to hear her say something about the hours she wanted to work, details related to the job, and maybe the possible compensation. But instead, Kelly answered this way: “Well, I realize this might sound superficial, but I just want to do what God wants me to do. I don’t really have many expectations going into this”. Ok…that was the right answer. Heck…that’s the right answer to any decision in life!!

With that foundation, we were excited to meet her. She came to the hospital this afternoon around 1pm and didn’t leave ’till 8 o’ clock! One of the first things we did when she arrived was to pray together, and ask the Spirit to give wisdom and discernment to all parties. And wow….did He ever! From the moment she came in and we prayed, I knew that she was the one!!!

She shared her story and where she’s coming from and we gave some more details about Ella and the complexities of her care. Kelly responded so well to Ella, and her attitude about taking care of her was just amazing.

Tina was going to go run some errands so Kelly went along with her. This gave them a great opportunity to connect for a couple hours, plus Kelly was able to see where she’d be living with us.

Once they returned to the hospital, we had a great time continuing our conversation and getting to know each other better. The Spirit continually confirmed the decision to have her be our nanny, and I could barely contain my joy. Tina felt the same way, but I think she was in such shock.

Kelly’s spirit is so phenomenal and her attitude about the entire opportunity really confirmed things in my mind. We talked more about the details for hours and then also amenities we’d be providing. Tina even jokingly indicated that we don’t use the cheap toilet paper, only Charmin. I confirmed that anything else would have been a deal breaker for me personally, and Kelly concurred. =)

At this point it’s just a matter of timing. We asked Kelly about her availability and she indicated that she could start working right away. She also confirmed the sooner the better so that she could really work with Tina to get to know Ella real well before Tina starts work. With that in mind, she’ll probably be starting shortly after we’re discharged from the hospital. This should help a lot considering all we have to do in preparing for the move.

Oh..yeah…how’s Ella doing? =) Ella had a good day overall. Her clinical behavior was great. She’s acting so much like the happy Ella we know and love. She did have some problems with secretions overnight which caused her to retch every hour between midnight and 5am. I was on Ella duty and with my lack of sleep the previous night, I was one cranky bear by 5am. Tina stepped up, took over, and told me to go to bed. Thank God for my amazing wife. I really don’t know how she does it.

Thanks to all of you who continue to pray for us. There are so many other side stories that we experience that don’t get shared on the blog where the hand of God is totally visible.

These moments continually confirm that phrase that God put on my heart back in Gainesville: ‘There are no accidents, only God ordained moments.’

That beautiful girl is Ella Renae silly! The person standing next to her is Miss Poland International™ Anita Brzeski. She was visiting the hospital to bring some smiles to the kids.

Typically, the volunteer visitors are comprised of the canine variety that come by to bring joy to the kids who aren’t feeling too well. We’ve had a few dogs stop in and love on Tina and me since we’ve been here.

That is what made this meeting a bit funny because the hospital representative had knocked on the door and asked if we wanted Ella to have her picture taken with…. and I didn’t quite hear what she said next. Miss Poland was not at the door when she asked this, so I was anticipating a dog entering the doorway at any moment. Needless to say, it was no dog. =)

You can see in the picture that Ella was more interested in the princess on the screen than the one standing next to her. Anita was very gracious and asked about Ella’s story. I told her a little about the journey Ella has been on and what a miracle our girl is. It was sweet of her to stop by and take some time to meet our girl.

Tina left us this morning to go show our house, run some errands, and just escape the hospital for a bit. Grandpa Joel (Tina’s Dad) brought me lunch and afterward we took Ella on a little walk around the hospital. It was such a gorgeous day here, we had to get out.

Overall I think Ella is doing real good. She’s not showing any signs of discomfort from the surgery and her incision is healing up nicely. We’re still trying to find the balance of meds that are going to work for Ella moving forward. Her BUN was 22 today so the docs decided to discontinue all of her diuretics. Tina and I are real happy to see her come off them, we just hope she’ll be able to maintain a steady balance in the coming days.

At this time she’s not showing any signs of respiratory distress, but her heart rate has been more elevated (170 awake, 145 sleeping), and she was not 100% happy today. There are a lot of things that could be contributing to this, including the fact that she’s cutting a tooth (wow…a normal baby thing) :). We’ll be keeping an eye on this closely though.

We’re still trying to increase the volume of her feeds and as of today she’s up to 75ccs over a 90 minute period, 5 times a day, plus her overnight continuous feed. We’ll be pushing her forward in this area as much as we can so she can be as close to her feeding goal as possible before we go home.

Thanks to all of you for the love and prayers that continue to strengthen us daily. Please pray that Ella will stabilize nicely on her medicine regiment, for her to tolerate her food increase, and for her overall progress. Please also pray that the Lord will give us wisdom and discernment in the coming days and that Tina and I would catch up on our rest as well.

Thank you Jesus for our beautiful little princess.

Ella’s doing better than she was yesterday, but is still far from being as dry as she should be. Her labs indicated a BUN of 14 which may be a bit artificially low due to her lack of feeds over the last couple days, but it’s still a ways from her dry target of 25.

Clinically she’s behaving better, even throwing out some smiles, but her respiratory and heart rate have been more elevated today.

Her IV Lasix was being administered every 3 hours yesterday to help get her dry, but as of 2am this morning, they switched back to every 6 hours. After rounds, we all agreed to switch her back to a Q3 schedule for IV Lasix until she’s completed her journey into feel-good-land. This way, she’ll be in a better place next week to test some other medications that will allow her to hopefully reduce her overall diuretic intake.

We’re excited for next week because we’ll be going after the potential cause of Ella’s fluid issue instead of just treating the symptoms. Please pray for wisdom in finding the right mix of medications.

A bit of good news: Ella was able to transition over to PO pain medications without issue so the pain specialist pulled her caudal epidural at 6am this morning. The removal was pretty rough for Ella, not because of the epidural catheter, but because of all the tape holding it down. Nothing like waking up to someone yanking a bunch of tape off your back (OUCH!). Fortunately, I was able to pick her up and console her pretty quick.

I’m hanging out with the Bun today while Tina runs some errands and shows the house to some prospective renters. We’re trying to be open to what God wants us to do from a rental perspective, so please pray for discernment.

Thanks for keeping up with our precious miracle, and for praying us through this rough time. Praising God for the work He is doing in and through Ella Renae.

Today was pretty much a repeat for Ella. Her BUN is hovering around 22 and she’s behaving mostly like herself.

No, that’s not a cast. If you remember, they ended up getting an IV in her left hand instead of her foot, which isn’t the most convenient place, but with Ella you gotta take what you can get.

We did discover a little milestone today….there’s a lower left front tooth starting to break through Ella’s gums! While we’re excited about this, it’s a bit of a bummer that it’s happening on top of everything else she’s going through. But, who am I to say that there would be a better time =).

I did my best to manage Ella during last night so that Tina could catch up on her sleep. We’re both still pretty wiped though. Tina’s not feeling the greatest either – seems like it might just be from lack of sleep. But prayers are needed so that she does not catch a cold and that Ella can maintain her steady progress until surgery.

I’ll be heading in the office tomorrow and then taking Wednesday off for the Bun’s surgery.

Thanks for the continued prayers and support!