Today is March 31st, so we think that you should mark your calendar today and every future year, in honor of Ella and all her comrades.

This is Congenital Diaphragmatic Hernia (CDH) Awareness Day.

If you see someone wearing turquoise today or sporting a turquoise ribbon, you’ll know why!

Babies born with CDH have about a 50% chance of survival, depending on how big the hole is in the diaphragm, how many organs moved into the chest, and how small the lungs are at birth. For many parents, this is a sad day as they are reminded of their angels that did not make it.

We weren’t sure if Ella would survive either. But after lots of surgeries and six months in the NICU, she beat all the odds.

Ella continues to battle CDH as it impacts her health and development each day of her life. Please continue to pray for her as she is still having complications since her most recent surgery in January.

We praise God for the blessing of Ella Renae and how He has already used this little one to impact so many. We look forward to seeing how His vision continues to be carried out.

Please take a moment to pray for all the CDH babies out there, for the families where their CDH babies didn’t make it. Praise God for the CDH miracles that are here with us today and pray for the families impacted. Lastly, please lift up all the CDH babies that are in their mommy’s bellies or in the NICU fighting the battle right now for their very lives.

Above all else, we know God is sovereign and has a plan for each of these CDH babies:

Psalm 139:13-16 (NIV)
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

It’s been a month since we’ve been home from the hospital and it has been busy!

Ella had a rough few weeks at home getting her body adjusted back to everything. The first week, we continued the Compleat Pediatric diet regimen as we had tried at the hospital post-surgery. In hind sight, this food did not work great the few days prior to surgery so I’m not sure why we thought it would be that different after surgery. As expected, the Compleat Pediatric diet caused all kinds of issues: tummy distention, gas, etc. After a feed immediately and for several hours, she looked like she was 9 months pregnant with twins! And we would vent or decompress between feeds and we were not getting a bunch out of her g-tube. This meant that the food was draining from her tummy fine, but I think it was making her GI tract very unhappy, thus the distention. She was not going #2 on her own and when we would use stimulants such as Senna or suppositories, we would get watery diarrhea. We were doing lots and lots of laundry. It was a frustrating time knowing that Ella just felt miserable.

After the first horrendous week, Josh suggested we switch back to the homemade blenderized diet. Her tummy did not seem quite as distended, but she was still uncomfortable and fussy after feeds. I tried smaller amounts, several times per day and it did not seem to be making much difference in her comfort. Simultaneously, we switched back to using Miralax, because our thought was to see if we could get her back to what was working the best prior to surgery. At the same time, we decided that it was time to start therapies again so we called all of her therapists, so we could get back on their calendars.

At the 2 week timeframe, we went to visit the surgeon as a follow-up. Her scar has been healing well. He also gave us photos from the operating room. It was amazing to see just how large the opening was in her diaphragm.

The same day, we also went to the GI doctor to discuss our feeding and GI challenges. When Ella was weighed: she came back at 12.3 kilos (27.06 pounds) which is the low point she was at right after surgery. In other words, she had lost more weight since being home from the hospital. So, we came up with a plan to try and see if we could make some improvement:

1. Continue increasing Miralax to a point where Ella is going several times per day, with the right consistency that is not causing her to strain in any way
2. To help with weight gain, add one more packet of MCT Procal to her food (3 packets daily) along with 12 scoops per day of DuoCal, another calorie enhancing powder
3. Substitue items in the blenderized diet to reduce the volume we need to give Ella to 1000ml per day, so we can get the biggest impact (e.g. instead of 8 oz of fruit juice, substitute a jar of baby fruit)
4. Call in an order to Apria for a new food pump that can be worn in a backpack – try using food pump to see if slower drip will make her more comfortable

So, I found a backpack in the basement that was given to us by a children’s foundation on one of our various hospital stays and put just a tiny bit of weight in it. I wanted to see if Ella would tolerate wearing the backpack. We switched out the food pump with Apria and started to try the drip feeds. Once again, Ella proved to do worse with drip feeds. I’m not really sure why, but she seemed even more miserable. One again, we determined that Ella does not follow the rules. She tends to do better with a larger volume given all at once and longer breaks in-between feeds. The only part that was great: seeing my little girl walk around with a backpack on – she looked so cute. It seemed like she was going to run and stand outside waiting for the school bus.

Oh, another thing we tried and it didn’t work great, but we just had to try: we found ourselves out in the RV and forgot her stroller. So when we went into a restaurant, we carried her O2 tank and accepted the offer of a high chair – that was a first. Did I mention that putting the O2 tank on the back side of the booth and running your over-sized touché into it on more than one occasion does not feel good? Once again, it only lasted moments (I ended up having to hold her) but she looked like such a big girl!

One positive outcome right away since surgery: she is passing out way less frequently. The only times now seem to be when she is in some type of really bad pain, like gas. I only know because at the height of the pass out spell, she relieves a bunch of gas. And I think all of us know what painful gas can feel like – I guess she just doesn’t have the reserve in that moment to take another breath. But the episodes are much less frequent. Also since the cath lab procedure and being home, we’ve been able to reduce her oxygen requirement to 3/4 liter versus 1 liter. In the past, we’ve had these reduced oxygen periods after a cath lab procedure – everything is nice and wide open. This time, we’d like to think that she is getting stronger, but only time will tell.

Ella is getting more used to playing on the iPad, specifically with an app called “ABC Wildlife”. When I turn it on for her, I can see her getting more interested and engaged. She’s even started to try and tap the screen herself. My favorite thing: the iPad will be turned off, she will see it, walk over and start tapping on the dark screen. No words necessary – I think I know what that means!!!

Another big project this past month: changing insurance. Our COBRA coverage ended on 1/31/2011, so we finally made the switch to a new insurance plan. Plus Ella was approved for Medicaid last fall, but we had already reached all the out-of-pocket maximums for the year, so we really did not end up using Medicaid for doctor visits or medicines. With the new year, it meant getting everything lined up with Medicaid too. Many of Ella’s medications require prior authorization from the primary insurance as well as Medicaid, in order for them to be covered. We even had to go through and switch her most expensive medicine: sildenafil. Even though it is thousands of dollars more, the primary insurance as well as Medicaid would not cover this medicine for pulmonary hypertension. Why? Because it is the same main ingredient found in Viagra. So, we had to change her prescription to Revatio. This is the brand name of the drug whereas sildenafil is the generic name for the drug. The difference in cost is thousands. Silly that they will not see her medical case and simply make an exception for sildenafil because it would cost the insurance company and Medicaid way less money. Another frustration: Medicaid is supposed to cover the costs that our primary insurance will not. But the system is tricky – if the pharmacy makes a medicine starting from a powder versus crushing tablets, can be the difference of whether or not Medicaid pays the difference. So this month, we were able to resolve all but two of the compounds. Hopefully, next month we’ll be able to figure out all of them so that we do not have to pay any put-of-pocket costs for meds (which previously has been hundreds of dollars).

We had 3 visitors since our last post:
A quick drop-by from a CA friend that we have known for years

Grandma West for 9 days

Cousin Pete for the weekend

Grandma West did start her huge project of hand painting Ella’s table and chairs, but only got 1/3 way through, so we don’t have any unveiling yet. Here is an unfinished chair – I think you get the idea – it’s going to be very fancy and princess-like.

It was definitely snowy and cold while Grandma West was visiting!

It has felt like a baking extravaganza this past month. When Grandma West was here, we made a couple batches of cookies and a carrot cake for my Bunco group. Then for Valentine’s Day dinner when Cousin Pete was in-town, I made a layered red velvet cake (that was a first) and chocolate covered strawberries.


Finally, Josh’s work had a company meeting and asked everyone to bring something homemade. I opted to make another carrot cake and when I had leftover frosting, my creative juices got flowing and I put their logo on the cake. I must admit, it was fun!

We went to the pediatrician this week, just for a follow-up since our big procedure. I let Ella out of the stroller to walk around and strut her stuff. The doctor was so pleased with how she looked and her increased exploration and interactive skills. The last time he saw her was late October when we were first trying the blenderized diet – she was still retching a lot, uncomfortable, feeding/pooping challenges, she was not walking, etc. He was really happy with her progress. Also, the scale looked favorable. According to his equipment, Ella has gained 2 pounds. We’ll see if that is the real weight gain when we see the GI doctor late this upcoming week. The reality is: I’m hopeful that we have weight gain that is not fluid-related.

Josh had a chance to go snow boarding with friends from work! I was jealous…

One bit of heavy news: we also learned that Grandma Eusey has endometrial cancer and needs surgery in mid-March. We’re hoping and praying that is all she needs to eliminate the cancer completely. Please pray for Ella’s grandma!

For those of you that were praying for Elijah, I wanted to report that he was sent home from the hospital on February 7th, so just under two weeks ago. Pictures are worth a thousand words, so I think all I need to do is post this picture:

The talk on the street is that we can go home tomorrow! I can’t believe how well Ella has recovered.

As I drank coffee and stared at the view this morning, I can’t believe that it will be 61 degrees on Sunday and then snow on Monday. Crazy!

Once the java took effect, I came up with a feeding plan to get Ella to her minimum “maintenance fluid” requirements:

8am (125ml)
10am (125ml +25ml pedialyte)
11:30am (100ml pedialyte)
1pm (135ml + 20ml pedialyte)
2:30pm (100ml pedialyte)
4pm (145ml +15ml pedialyte)
7:30pm (145ml + 20ml pedialyte)
11pm (145ml + 20ml pedialyte)

We left her IV on a very slow drip of 5ml/hour, just to keep it viable. But I’ll be excited to remove it tomorrow. Once again, another shock: that her IV lasted over a week. That is so rare. Plus, that we only needed to stick her once for a set of labs.

This morning, she had not yet gone to the bathroom, so we gave a 1/2 capful of Miralax. Then during rounds, we talked about the fact that she still had not gone to the bathroom yet. I expressed concern with delivering suppositories at home – she fights so hard. It does take 2 adults to put it in her and she is so strong at resisting and fighting back. You can’t blame her, but I was having trouble seeing how I would do this lovely job solo. So, the pharmacist recommended continuing to give Miralax (stool softener), but also using Senna (stool stimulant, from a herb called Sennoside). Since these are both administered via her g-tube, they take longer to take effect. By 4pm, still no poop so we gave another 1/2 capful of Miralax. It is now 11pm and still no poop. My thinking was to only give the suppository if she complains. I have waited for her to refuse a feed, be too distended and not tolerate a feed. But since she took all the feeds like a champ, we reached our goal feeds.

Besides increasing feeds slowly (which she has done incredibly well with them), I’m sure it is going to be challenging with her bowels. They need to wake up!!! I’m a bit worried about working this out at home, especially since the Miralax and Senna do not seem to be doing much, but I think we’ll get a dose of suppositories/magic bullets just in case. If I need another person, I can always wait until Josh gets home from work. It is just a good option since they take effect within an hour.

UPDATE since I started this post: It is midnight and Ella just pooped. You know it’s bad when you get excited over poop! The only challenge now: poop is loose! I have changed 3 diapers in the past 15 minutes. Ahh…the art of all of this with the intestines!

Since Josh will be at work tomorrow, Grandpa offered to come and help us leave the hospital. It will be nice to be back home in our own beds and get some feline and canine love too!

Also, please continue to keep Elijah in your prayers. He is headed to the OR at 11am CST, for his surgery to close him up from his diaphragm repair surgery over a week ago.

Thank you for the support shown in-person and virtually this past week.

Psalm 91:2
This I declare of the LORD: He alone is my refuge, my place of safety; he is my God, and I am trusting him.

I am really tired, so I’m going to try and make this short and sweet.

Ella went to sleep around 11pm last night. By the time I went to bed, it was 12:30am. So I was a little more than bummed when Ella decided to wake up at 6am. Did she really just want to make sure that she could meet the surgery team for rounds this morning?!? It is predominately boys and she tends to like guys better. I’m not sure, but as I was brewing coffee in my hospital room and trying to regain my senses, I had to shake my head at the crazy monkey. Most nights she is up partying and this morning, she wanted to see the sun rise!

We had a chest xray this morning and compared it to the one taken right after surgery. After surgery, the area of surgery in her chest was empty and black on the xray. This morning, the area of her chest where the colon was removed has now filled with fluid. This is a normal response on the part of the body. However clinically, she is doing fine and so they are not making any treatment plans for it. Her breathing is not labored breathing and she is not requiring more oxygen. From a fluid standpoint, she is a little positive but is maintaining fine. The last dose of Lasix was Monday.

Sure enough, Ella needed a nap today since she was such an early bird. I love watching her sleep.

Last night, we went to give Benadryl via IV to make Ella sleepy. After 10 minutes, I noticed that Ella was still very awake and cranky, but not sleepy. Then I noted that her diaper needed to be changed. As I changed the diaper, I saw part of the IV cord unattached and loose in the bed. I hit the “stop” button on the IV pump and called the nurse in. She could tell that Ella likely had not received the Benadryl, so she had to reorder it.

In the meantime, the IV pump kept giving an error that it was occluded. After a bunch of diagnosing with the tubing with lots of trial and error, she ended up at the IV site. It looked fine but then wasn’t flushing. So then we feared that the IV might have gone bad although it did seem odd that it was perfectly fine one minute and then not good the next. So, there were 3 nurses in the room hovered over Ella and holding her arm, trying to keep the IV. Finally, a certain tweak worked and the IV successfully flushed. Then they had to re-secure the IV in place. Ella was fussy and cranky from them messing with the IV and holding her arm tightly over such a long period of time. Finally at 2am, the Benadryl hit and she went to sleep.

One good thing before the IV scenario started, we stopped the Dilaudid drip and so this would be her first extended period off any narcotics/pain killers. Now if she needs pain meds, we have to request Tylenol or another drug that we would give to her via her g-tube, similar to what we would do at home.

Also before going to bed last night, she became “even” with her ins/outs and did not require Lasix! She woke up once at 3:45am and seemed to be having the same cramping pain by puling her knees to her chest. After 5 minutes, she went back to sleep.

In keeping with tradition, the surgery team came in at 6am to discuss how she has progressed. In a fog, I did my best to give them an update on her status. They are responsible for her pain management and getting her feeds to be successful. We gave small boluses of Compleat Pediatric today starting at 10am (60ml), 12pm (80ml), 2pm (100ml), 4pm (100ml), 7pm (150ml), and 10pm (150ml), for a total of 640ccs food and 27ml via IV. We’ll see if she can tolerate the larger boluses of 150ml. I was a bit hesitant, but the surgery team wanted to move quicker, so I conceeded. One thing is for sure – she will let us know!

I tried to let Ella sleep longer today, but she was awake by 10am. The pulmonology team let me know that she was 500 positive for fluid and recommended Lasix plus a dose of Potassium along with labs later in the day. I requested that they hold off, let Ella wake up and see if she catches up. Sure enough by 2pm and a few feeds later, she was even on her ins/outs for the day. I was so happy that we skipped the diuretic, but more elated that we bypassed sticking her!

Another issue: poop. Once again, she was not going on her own and I voiced concern over being too aggressive with feeds if she was not going to the bathroom. So, we ended up giving another suppository and it worked again! This gave me the peace of mind to keep increasing her bolus feeds throughout the day. This evening, we gave another dose of Miralax but doubled the amount to 1/2 capful (8.5 grams). If she hasn’t gone again by 12 noon tomorrow, we might be using another suppository.

Throughout the day, she felt good but was a bit more whiny, but it seemed like it was simply from not getting enough sleep. Maybe she’ll go to sleep earlier or without Benadryl tonight.

We finally got a consult from neurology but it was uneventful. First, there was an EEG ordered yesterday and they came to do the test and I told them that I wanted to discuss it with a neurologist first. I did not understand the benefit of the test; they ordered it thinking that Ella was continuing to pass out and would give them a pass out spell while conducting the test. I wanted to make sure there was benefit to the test besides the pass out spells. Plus, I had heard that due to the recent narcotics in Ella’s system, it would not be ideal to have an EEG right now and we should schedule one in a few weeks. But then a different resident would tell us that the narcotics would not skew results and it would still be good to get the test now. The inpatient test takes 24 hours and an outpatient test takes anywhere from 30 minutes to 4 hours.

After discussion with the neuro team, we opted against the EEG. The neuro team strongly recommended this test if we suspected seizure activity (like her pass out spells were involuntary). Since we’ve not seen any clinical signs that lead us to believe that Ella is having seizures, there is no need for the test. I really was hoping for more specific info on the MRI findings, but it sounds like I will have to wait until the outpatient appointment to address any of my concerns.

At a high level, the results sound about the same: a small portion of L parietal lobe damaged as well as global cerebral atrophy (her brain is much smaller than a healthy kid her age). But I did not get to see the MRI images nor collect any useful information as far as what this actually means in our day-to-day life. At the very least, the test is complete and provides a baseline in case we need to compare it in the future when she is older and/or if she does begin to have any other issues, such as seizures. They did mention that her risk of seizures is 50% higher and that we should always be on the lookout for any changes.

Ella’s occupational therapist came to visit her and brought her a new book. She seemed disinterested at the time, but then I looked over later, and she was checking it out!

The best news: we are making great progress with feeds and are just trying to not be too aggressive, but move Ella off the IV pump and on to 100% feeds. Along with that, making sure that her GI system responds. If she keeps this up, I think we may be able to go home in a few days and finish the remainder of the transition at home. I have never seen Ella recover this quickly from a surgery. I’m still in a bit of shock that we’ve only been here a week and that she is doing so well.

Thanks for all the continued thoughts and prayers for our sweet Ella Renae.

Ella woke up once last night at 4am, after the nurse completed an assessment. I could not get her to go back to sleep, so we gave her another dose of Benadryl. Sure enough, that seemed to do the trick and she went back to sleep.

So far, I am completely in shock at how well Ella has recovered from this major surgery. She slept until 12 noon (I did my best to keep everyone away from her and give her the most beauty sleep possible). Once she woke up, the plans from rounds were put into place.

First, we went ahead and decreased the Dilaudid drip from 12 to 10. This is the lowest the continuous drip can go. The plan is to turn it off when she goes to sleep tonight. I have not had to give Valium at all today. She is in a great mood and seems very comfortable. A few times during the day, she has tried to sit up and move around. Quickly she realizes that her abdominal muscles were cut just a few days ago and it causes her pain to move around. So, she knows her limits and just lays back down. Although late tonight as I type the post, she has been sitting up a ton, even standing. The nurses are walking in, doing stuff to her and she is fine. Two days ago, she would lose it if a nurse even walked in the room. Another sign: she loves playing with her computer and I know you’ve all seen her exploring with her tongue. Today she started licking her computer. This is how I know she is feeling good!

Weaning her from the narcotics is a huge step forward. First, it just means we’re closer to going home. Second, they want to do an EEG and narcotics throw off the results. Third, the narcotics can slow down her intestines. We need for them to wake up and work!

We have not given Lasix yet today, but that may change this evening. We’re trying to wait and see if her body will respond on its own. The last couple of days, we’ve been able to get away with a single dose each 24 hours. If she is positive by 300 or greater at midnight, they will give another round of Lasix and Potassium. The bummer about that part: it means that we will need to do follow-up labs tomorrow and stick her. So, pray that Ella’s normal prescription of diuretic to do the trick (Aldactazide) and she will start to pee a lot.

There was some discussion today that it might be favorable to go ahead and stimulate Ella’s intestines. Rather than another suppository, we opted for a less aggressive option: Miralax. The dosage written by the docs was small: 1/4 capful per day. There have been times that Ella has required 1 full capful per day, so I’m not sure if 1/4 capful will stimulate the intestines enough. But they want to start small and increase only if they see her not going to the bathroom after a couple of days.

We gave small boluses of Compleat Pediatric today starting at 10am (40ml), 12pm (60ml), 2pm (60ml), 4pm (80ml), 6pm (80ml), 8pm (80ml) and 10pm (100ml). So far, so good. When I decompressed between feeds, I was only getting 0ml – 35ml drawn back. And when it would go in via gravity, she did not seemed phased at all. I’m excited to get food in her – – she is SO skinny. Moreover, there has not been any retching. This has probably been the largest benefit to changing to a blenderized diet – no retching since the first week of November. And even though Compleat Pediatric is canned, it is still a blenderized diet. Who would have thought that giving her real food versus commercial formula would just make that horrible experience cease? We’ll just see how her intestines like all of this action since her colon was rearranged in surgery! Hopefully, her sulfasalzine medicine is keeping her colitis in check and so her intestines will not be too upset.

To compensate for her fluid levels, we turned down the IV pump to 33ml/hour (it was 45ml/hour up until today). So this means she is getting 500ml of food and 800ml of IV fluid. I think we’ll likely keep the food situation similar tomorrow, maybe increasing feeds only slightly until she stools. I’m concerned about being too aggressive with the feeding plan because I don’t want her to back up. That will make her really uncomfortable!

And so far today, I have not head her draw her knees to her chest and desaturate or have any pass out spells. Plus, I have heard her toot a couple of times – that is a good sign.

Neurology was supposed to come and visit us today and it didn’t happen. So, I expect that we will be hearing from them tomorrow.

Regarding Ella’s CDH buddy, Elijah had another surgery this morning. Unfortunately due to the swelling, they were only able to close him 2/3 of the way. It will be a gradual process fitting all of his organs back in, but they are hopeful that they can close him up completely by the end of the week. So please continue to pray that they can keep him comfortably sedated and that he does not get an infection! He is stable, but still very sick. Also, that Ella starts to pee and poop (on her own as much as possible), that her IV stays going strong, and that she can continue to tolerate feeds.

1 Chronicles 29:13 (NIV)
Now, our God, we give you thanks,
and praise your glorious name.

Ella had a great night. She only woke up once around 3am with some pain. Again, we think it is sharp, cramping GI pain. Once it passed within a minute or two, she was fine and fell right back asleep – snoozed until 11am (about 12 hours). We had a great nurse overnight that was very stealth – this meant Mom caught some zzzs too!

Ella enjoyed playing with her new teddy bear again today. Plus, the bear was joined in the afternoon by a penguin! Now Ella has 2 buddies to keep her company in her crib.

Today, we were able to take several steps forward on Ella’s progress. Here are some of the highlights:

1. We decided to try and wean the Dilaudid drip down a notch. That seemed successful.
2. We gave Valium at 11am and once again at 8pm, so definitely less often than 1x/every six hours. We will probably try weaning the drip even further tomorrow(Monday).
3. We’ve only given Benadryl once each day; mostly been effective at putting Ella to sleep.
4. Surgery gave us the thumbs up to remove the foley catheter.
5. In order to try and stimulate Ella’s colon, they placed a suppository this morning. After a couple of hours, we had more than a smearing of stool. Success!
6. With the foley catheter out, we have to do daily weights. Ella weighed in at 12.3 kilos (27.06 lbs) down from 12.6 kilos (27.72 lbs) the other day upon hospital admission.
7. Since Ella has not had any food since last Tuesday and she is rapidly losing even more weight, we consulted with Surgery and came up with a plan to introduce food.
8. Also, we were able to negotiate not using the food pump to introduce food back into her system. We gave small boluses starting at 4pm (10ml), 6pm (20ml), 8pm (30ml) and 10pm (40ml).
9. Instead of venting her g-tube continuously as the docs originally wanted, we convinced them that Ella does well with us manually decompressing and drawing back every so often.
10. Her IV pump is still running at a rate of 45 per hour (1080ml in a 24 hour period; maintenance fluids). Plus, we gave her 100ml of food.
11. By the end of tonight, Ella needed another dose of Lasix – she was about 400ml positive. So, they gave another round of Lasix plus chased it with a dose of potassium(I just changed a diaper that weighed 431 – that is a record!)
12. We advocated to not feed Ella overnight since we will not be doing this at home. The closer we can work towards replicating our home routine, the better.
13. So far, there has been no retching from the Compleat Pediatric formula and she has taken the small boluses via gravity just fine. WOW! We have a long way to go, but the initial success is reassuring.
14. She still has intermittent GI discomfort and will out of the blue, draw her knees to her chest and cry real hard. We did have 2 pass out spells today along with many other incidences that were close calls.

Tomorrow, we expect to hear from Neurology regarding the results of her MRI last Wednesday. We hope that will give us a better indication of how Ella’s brain has developed and how we can take that info and make good use of it.

Thank you for all the thoughts and prayers. As you can see, Ella is making great progress and we’re thankful for her success. We’re hoping to be able to have more success with feeds tomorrow and continued comfort from a pain standpoint as we further try to wean the pain meds. Finally, as we begin to transition to more and more food and become less dependent on the IV fluids, that the IV will last through this transition and that Ella’s GI system will cooperate.

1 Chronicles 16:34 (NIV)
Give thanks to the LORD, for he is good;
his love endures forever.

Last night, Ella was exhausted but she would not go to sleep. At 1:30am, I pulled the trigger and we gave her Benadryl via IV. It was fast acting – she was asleep in 10 minutes. So, last night provided a solid 5.5 hours for me. Even better, we were able to keep the room quiet enough and assessing from doctors to a minimum in the morning too – Ella did not wake till 11:30am.

Before we went to sleep last night, the resident could tell that Ella was getting fluid positive and wanted to dose Lasix again. I was fine with this plan, but she also wanted labs (the earlier attempt for labs via the IV did not work). When really trying to figure out why she wanted the labs, it became apparent that she was concerned that her potassium was too low (it was low ont he last blood draw). After talking through it, I requested that she chase the Lasix with another dose of potassium. Since we were giving the dose PO (via her g-tube), Ella’s body would take what it needed and pee off the rest. Also, I convinced her to hold off on placing the order for the labs. I knew that we would likely need labs today, but I wanted to have the day team write the order and make sure they did not want to pull anything else.

When the day crew came on, Ella was still fluid positive. The midnight dose of Lasix did not do much. So the goal during rounds: cluster as much as we can with a blood draw today and always chase the Lasix with potassium supplements. More importantly, unless there is a really good reason, not even discuss another set of labs until Monday. One thing that made things so much nicer: even the crew that was rounding, knew Ella specifically and respected our input. Sure enough, they implemented all our suggestions. In addition, they gave her a larger dose of Lasix and Potassium and that seemed to do the trick for Ella’s body. She peed like crazy throughout the day and is even or a little negative this evening. That is a good way to go into the night.

We tried using the valium less today too. One reason we were able: Ella did not wake until 11:30am and then we tried to hold off giving it until the afternoon. We knew that we needed a blood draw and wanted to give the valium 15 minutes prior to try and help the event not be as traumatic. Sure enough, it worked. Drawing the labs was still a challenge with Ella’s veins but with the valium on board, she did very well. We got the labs back and her potassium was 4.0 – which is great. And her inflammatory markers showed slightly elevated, but they expect to see this right after surgery. They did this extra test of the inflammatory markers because Ella was getting low grade fevers intermittently throughout the day and they wanted to make sure that they were not missing something.

Overall, Ella had a good day. Although I think because we used less pain killers, she seemed a bit more fussy at times. In fact, she was still dealing with intermittent bouts of pain which appear to be GI related. Fast acting, sharp, cramping pains where she draws her knees to her chest. It seems like her bowels might be trying to move things through, but it is causing pain. So throughout the day, we were doing our best to console her when nurses or doctors walked in the room or she was experiencing pain. Unfortunately, she passed out a total of 4 times. Once at 1:30am before she went to bed and 3 different times throughout the day.

Since Ella has not passed gas or had a bowel movement, there is going to be discussion on rounds tomorrow of being a bit more aggressive to see if they can jump start her system. Ella has not had any food since last Tuesday and so they really want to start giving her food for nutrients, but they won’t do that unless she passes gas or has a bowel movement.

We still have the foley catheter in place although I will likely be requesting that it be removed tomorrow. During the times when Ella was feeling well, she decided that she wanted to try sitting up. It was a little challenging for her at first, but she would push through the pain and once was in an upright position, liked staying there. One time this afternoon, she seemed to not be moving so we took advantage and gave her a sponge bath. I really want the foley catheter out because I can tell that she is starting to become more active and wants to move around. Also, there were times today that I think she wanted me to pick her up and console her. It makes it tough to do that when it’s still in place.

We still have challenges ahead, but overall Ella is making great progress. Thank you so much for all the support and prayers.

Lamentations 3:25 (NIV)
The LORD is good to those whose hope is in Him,
to the one who seeks Him

Last night was rough. Ella whined and cried all night. I could tell that she was in pain.

Knowing Ella’s course of narcotics last time and how morphine makes her itch her skin off, we were trying a different approach to pain management. As the hours progressed, we could tell that the amount she was getting was not sufficient. About 3am, we ended up switching to a low drip of narcotics with the ability for me to push a button and give further small doses. Also, they decided to keep the same dose of valium but increase the dosage to every 6 hours. Finally in the middle of today, we ended up increasing the low drip dosage along with the valium and feel like we’ve hit a sweet spot. Finally, she stopped crying and whining. She’s a little sedated, but not experiencing constant pain.

The toughest part with all of that too – she has so little tolerance for anything, noise, nurses, doctors, etc. I basically stood next to her crib and would sing to her and try and soothe her through the pain while we waited to see if each increment of med changes would take effect. Many times, she simply lost her patience and would just start crying really hard from the pain. I would increase her nasal cannulas to 4-5 liters, and console, coaxing her to breathe. During one of these episodes at 3:30am, even with the O2 very high, she dipped way down into the 30’s on her saturations. This caused major alarm in the unit with the overnight staff, so about 8 nurses rushed into the room, pushed me aside, turned on the oxygen mask and were prepared to intervene. That might work with other kids, but it tipped her over the edge. She heard/saw a whole bunch of strangers, the O2 mask and ended up passing out. That is the first spell we’ve had since the surgery.

Once again, it all starts out behavioral in the sense that there is pain or frustration that sets her off, she clamps down and cries really hard, saturations dip way down. That is typical Ella. Any of her NICU nurses could tell you that she used to keep them on their toes in the NICU with the same behavior. So the breath holding spells from that standpoint are pretty typical, even for her toddler age. I’m really used to that behavior from Ella. However then Ella tries to go to take another breath and because her system is compromised (pain), she is not able to inhale and take another breath. That part is not by choice – I think she wants to take another breath and belt out a huge cry to let you know how upset she feels…but her body does not cooperate…and I think it scares her further that she is not able to breathe and is not in control.

Ella was starting to itch her eyes and nose a lot this morning so they gave her Benadryl immediately via IV and then ordered Atarax, which tends to be stronger and more effective. Along with that, the surgical team came to see her and noted that we could take the NG tube out of her nose. That was huge – it was driving Ella crazy. Unfortunately between the itching and frustration, she was still able to get a few good scratch marks around her eyes and nose but fairly minimal compared to what we’ve seen before. For now, the itching seems to be controlled with the meds. And finally in the afternoon around 3:30pm, Ella finally started to get some peaceful zzzs since her surgery.

They needed to give Lasix twice last night, but it helped Ella to maintain her fluid levels. And comparatively, only two doses of Lasix so far is a small amount post-surgery. So, she’s doing well. Having the cath lab procedure done the day before helped to ensure that her fluid levels would maintain too.

They did need labs earlier which is always traumatic. When they give Lasix, it is a given that they will want labs to check her potassium. However, we were so fortunate. We were able to draw from her IV – which is so rare. This was great because then we did not have to stick her! From the labs, they did learn that she needed a supplementary dose of potassium because it was a little low. They gave it to her via her g-tube versus IV, so we know that the levels were not too low or emergent. This evening, they came back in to get another set of labs to re-check the potassium. They were not able to draw as much from the IV as they wanted, so we’re going to have to draw again later tonight. We’re crossing our fingers that they are able to draw enough and we can avoid a stick.

The active stomach and bowel sounds are increasing and the docs keep asking if she has passed gas. She has not quite yet, but I think that air is passing through her intestines and it seems painful. She will clamp down, desaturate and draw her knees to her chest. So I think she is experiencing cramping. The spells don’t last long, just a few minutes. We’re hoping those begin to subside.

Besides trying to manage pass out spells and dealing with the normal advocating, Ella is doing great especially compared to last time. Most of the time she is content and just resting, watching her videos.

Check out the difference in her last surgery, post-op one day versus this time around. Being in Denver with her primary team is making a HUGE difference!

Last surgery (out of state hospital):

This surgery (her primary hospital):

In addition, the outpouring of support from those locally has been amazing. Snacks and meals delivered, gift cards for meals, visits, help with the dogs. All of it is so appreciated as well as all the comments, thoughts and prayers via the blog.

On an ending note, I just want to ask again that everyone pray for Elijah and family. As some of you know, he went in for the same surgery as Ella on Thursday except this was his 4th time having surgery for a diaphragm hernia repair. Below is a photo and words his mom wrote to me when I asked for an update via email.

Elijah’s surgery took 10 hours. Each time they go in, it gets longer and harder. It took over two hours just to place the art. and central lines. Removing all the scar tissue took a couple hours and exploring what happened to his muscle flap and deciding what type of material took a long time as well. They realized that his flap didn’t receive adequate blood supply and the body completely absorbed it. He spent two months with no left diaphragm. They found his kidney, spleen, colon, stomach and intestines were all up in his chest. Because his “stomach” area has been empty for a couple months and his intestines are swollen from the surgery, they couldn’t close his incision. This poses a greater risk of infection, so we are praying he remains stable and infection free. (He has a history of developing infections post-op, so that makes me nervous!)

As you can see, Elijah is such a trooper! They don’t plan to close him up until Sunday or Monday, so we need to pray for no infections!

And pray that Ella remains comfortable throughout the night from a pain management standpoint and that we can get some sleep!

Hebrews 4:16 (NIV)
Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

Ella did not sleep much last night. She was fighting sleep till 2:30am. Then with all the nurse and doctor visits, she only got a few hours. But she was in as good of a place as we could have expected for this procedure.

About 9:15am, they transported her downstairs to the OR room. We were in the pre surgery area, talking with the anesthesiologists and surgeon.

We went over all of our concerns including how they planned to manage her pain. We did not want the same issues that we encountered in CA with her last surgery and heavy dosing of narcotics. It is so reassuring though – the team here is great. They really listen to parents.

Afterwards, we dressed for the OR complete with suits, masks and hair nets so we could walk back and be with Ella as they put her to sleep.

They gave her Versed via IV first which made her loopy and smiley. Then, they administered Propofol to put her to sleep. Before they administered the heavy anesthesia, Josh asked if we could take a moment to pray over our child. Of course, I expected the humble moment before God to cause some tears. What I did not expect: the anesthesiologist asked for one moment to finish a task so that he could pray with us. We held hands and surrendered our child to the Lord.

UPDATE by Tina at 10:50am MST: At 10am, we walked out and surgery was officially started. They just called at 10:50am, to give us an update that Ella is doing fine and that Dr. Partrick just made the first incision. Thanks for all the thoughts and prayers.

UPDATE by Tina at 12:15am MST: The nurse just called from the OR. Dr. Partrick did have to use more gortex patch to repair the diaphragm hernia. Ella is still stable and they are getting ready to close. Likely another 45 mins to an hour before its complete. Everything has gone smoothly so far.

UPDATE by Tina at 3:45am MST: We went back to the recovery area to see Ella. Wow, it doesn’t get any easier…it’s just hard to watch your child go through these procedures. Fortunately, she was extubated – that is HUGE. If you remember during her last surgery at CHOC, they did not extubate her and then had to dose her with narcotics to keep her sedated. Here, they extubated her and she is stable on 2 liters of O2 via her cannulas.

We spoke with Dr. Partrick (surgeon) and he said that everything went well. There was a significant hole in her diaphragm and most of her colon was in her chest. He had to use another gortex patch about 3cm x 5cm to cover up the new hole. He noted that her nissen and hiatal hernia repairs from previous procedures still looked intact. One thing that did surprise him was the amount of scar tissue/adhesions in the chest cavity. The colon had not just floated up to her chest, but had adhered with scar tissue to her lung tissue and surrounding areas. This is not common to see. So most of the surgery was removal of adhesions. In discussing it with him, one possible reason for more adhesions is because Ella’s chest cavity was scarred intentionally with betadine when she was in the NICU.

Although he cannot be 100% sure that this was the core cause of her recent pass out spells, he noted that the repair was more extensive than anticipated and was definitely impacting her pulmonary status and her GI system. All of us including the docs are hoping that once she recovers, we will not see any pass out spells.

The recovery nurse informed us that we were going to be put under the cardiac service. Once again, it required some advocating and intervening – Ella belongs under the pulmonary service. In this way, we were able to come back upstairs to the same room as last night.

Right now, the plan is to keep her comfy with pain meds via IV (Dilaudid/Hydromorphone). If we think Ella is getting uncomfortable, we can push a button and administer more meds. They did give her one dose of morphine in the recovery area, but we’re trying not to use it since Ella gets itchy and can hurt herself with her fierce scratching.

She’s had decent urine output, but the pulmonary team is watching to see if they need to give her Lasix via IV. The plan is to keep her even with her ins/outs and stay on top of it through the night. We saw a chest xray – it looks a little hazy, but not bad considering everything. The surgery team is holding her food for 2-3 days and just letting her recuperate. If tonight goes well, we may be re-starting her plavix and aspirin to help with her SVC occlusion as early as tomorrow. She has a foley catheter and the NG tube is weaved through her nose to help decompress her stomach area. Plus, her G-tube is being continuously vented too. Hoping we can get rid of those things soon.

Thank you for all your continued prayers for Ella Renae.