Wow, it is late for a post but we just got settled into our room at the hospital. Here is a recap of events…

The last few days at home have been tough. We did try the new diet using Compleat Pediatric canned food. Ella’s system was not adjusting well. She was not retching, which is great. However, her intestines did not seem happy. We started to see lots of symptoms similar to her eosinophillic colitis diagnosis last July. First for 2-3 days, we couldn’t get her to stool. Then she became so backed up that we had the opposite problem. We were a bit scared because there were times where her belly was getting very distended. She seemed uncomfortable and then would have pass out spells, sometimes multiple in a row. All of that just reassured us that it was time to go to the hospital and make some forward progress.

We checked in at 10am this morning and went to the pre/post recovery area for the heart cath lab. When we weighed in, Ella had lost more weight – she was 12.6 kilos this morning (27.7 lbs). After the nurses got acquainted with her, the first item on the agenda was an MRI at 12 noon. It was a standard MRI with some extra testing for the vascular structure in her brain too. They administered Versed via her g-tube about 45 minutes prior to help her get sleepy. Then, they let me get in the gurney with Ella and take a ride down to radiology (that was fun)! Once we arrived, Dad went into the MRI room with her while the anesthesiologist put a mask on her face with gases to make her go to sleep. After a couple of tries, they were able to place an IV in the crook of her right arm. For those of you that have been following Ella for a long time, two tries for an IV is a high success rate. Then, the MRI lasted about 30 minutes and by 1pm, she was back in the pre/post recovery area for the heart cath lab.

There was some discussion about Ella possibly being placed in the ICU, depending on how the cath procedure went. She’s always done great before so we were not too concerned, but it was always a possibility.

Her heart cath procedure was scheduled for 1pm however they were running behind. We learned that they were doing a cutting edge procedure for another child that was just taking a lot longer than expected with some unforeseen complications. But it was amazing to hear – – they were replacing a heart valve via a catheter. For those of you that do not know, just google “heart catheter” to read how this procedure generally works and then picture them replacing a heart valve with that procedure. Wow…

In any case, we were more than understanding and just waited in the pre/post heart cath lab area until they were ready for her. Finally at 4pm, they came in to administer Versed via IV to make her sleepy. I put on a gown and carried her in her sleepy state over to the heart cath lab and stayed with her until they finally put her to sleep.

They call and give you updates each hour. The first hour, they called and told me that she was stable but they were still trying to gain access via her femoral artery. Apparently once that finally happened, the rest of the procedure went quickly. We were back in the pre/post recovery area around 6:15pm.

All of Ella’s pressures look better than they ever have in any prior cath procedure. Her SVC stents looked great too. The only thing they noted was a narrowing of one of the arteries coming off the SVC, so they went ahead and ballooned that vein to open it up more. Overall, her cardiologist was very pleased with how everything looked and joked that he was not sure why he was the least bit worried prior to the procedure. He was expecting a much worse condition and is pleasantly surprised how well the plavix is doing at maintaining the SVC stents. All of this to say that there was nothing uncovered to explain the pass out spells. Everyone’s best theory at this point: her system is compromised because of the diaphragm reherniation and doing the surgery will make the pass out spells go away. Time will tell…

Ella had to remain flat on her back for 2 hours after the cath procedure. They administered Tylenol to keep her more comfortable. Also, they kept checking her groin area on the left and right hand sides to check the sites. After a cath lab, they always want to check for excess bleeding. Also, there was some discussion about whether or not to feed Ella the Compleat Pediatric food. Josh and I both voted to not use food tonight; we felt that just IV fluids and bowel rest would be more optimal. It’s a tough call because you want her to have the calories when she is losing weight, but since this is not her regular food and she has a bunch of GI issues anyway, it just seemed safer to not give her food. Plus it would be different if Ella wanted food: but remember, she is so used to being fed on a schedule and has had such a poor experience with feeding during her life, she actually prefers to not be fed. So, we just felt like skipping a meal before her big surgery was not a bad idea.

After an extended stay in the pre/post recovery area for the cath lab, they made arrangements to send us upstairs. The only problem: there was some miscommunication and they sent us to the cardiac wing. That is typical protocol for a child that has gone to the cath lab. However since Ella has so many other unique issues, the pulmonary team likes to follow and manage Ella after any and all procedures. Once we started to get settled into our room around 8:15pm and realized we were under the wrong service, we had to advocate to get moved. Fortunately, we have an inside contact. I felt bad paging her at 8:45pm, but once I reached her and shared what was happening, she made a couple of calls and things started to change. We got moved over to the pulmonology service on the same floor within 15 minutes. We were even able to request a west-facing room (so you can see the mountains and city lights) and don’t get blasted with the sunrise. Boy, it’s all about who you know!

Praise God, Ella is doing great tonight – she sounds a little hoarse from the ET tube (endotracheal tube) and her legs seem like they might be sore from the cath lab procedure. I’m having the nurse see if we can give her some more Tylenol before bed, to help ease discomfort and make her sleepy. I’m hoping she rests overnight before the big surgery tomorrow (Mom could use some zzzs too). The surgery is scheduled for 9:45am. If the schedule stays intact and there are not any emergent cases, they would likely take her down about 30 minutes prior to the surgery. But as we experienced today, the schedule can always get pushed out. Once they start, Dr. Partrick expects the surgery to last 3-4 hours.

We’re hoping and praying that Ella can stay strong during the procedure tomorrow and start a solid recovery. The last surgery took 31 days at the hospital to recover, but it was emergency bowel surgery. We’re hoping this procedure is better tolerated and that afterwards, she decides to speed it up a bit and not get to know all the nurses on the 9th floor!

Surgery day can be another long day and crazy, but we’ll post as soon as we can tomorrow. Thanks again to everyone that has provided support – thoughts and prayers, meals, visits – all of it means so much in these times.

My heart is rested and thankful as I prepare for sleep: He has carried Ella through her first day of procedures.

Psalm 92:1-2,4
It is good to praise the LORD and make music to your name,
O Most High, proclaiming your love in the morning and your faithfulness at night…
For you make me glad by your deeds, LORD;
I sing for joy at what your hands have done.

Thankfully, we were able to get the heart cath lab rescheduled to Wed, Jan 5th. In addition, we also have the MRI scheduled the same day. This means that we are not going to the hospital and being admitted until Wed, Jan 5th. The diaphragm hernia repair is still set for Thursday, Jan 6th.

So far, we’ve only had a few minor scares. We’ve seen pass out spells increase as of recent and it does seem like it might be related to pain – gas or trying to stool. She will start crying, pass out, and then gas passes or she fills her diaper and it really stinks! Since part of her colon is in her chest, it is reasonable to assume that it might be painful.

Also, we’ve been trying the new diet the past couple of days (Compleat Pediatric, canned blenderized food). She is not retching – which is huge. However, she does seem to be having more trouble stooling. The minimal stooling we’ve seen has been more runny and filled with mucous. We even opted to skip a feed last night because her belly was so tight and distended and she has not been filling her diaper as much, even with the continuation of Miralax. We know that problems with her GI system might occur. Right now, we’re just watching closely and hoping that it is merely related to an adjustment in food.

Rewinding a bit, we celebrated with Grandpa on Christmas Eve complete with tri-tip, mashed potatoes, spinach, rolls, jello mold and pecan pie. We unwrapped gifts and had a blast watching the dogs play with the new toys Santa dropped off (guess they weren’t naughty this year)!

Then on Christmas Day, we accepted the invitation and headed to the mountains to hang out with some friends. Ella mostly watched her videos, but she was content the whole time!

I mentioned in the prior post that Ella was very blessed this Christmas. Grandma West coordinated family members to send Ella an unfinished table with chairs for her play area. The best part: Grandma West is going to put her artistic talent to work on her next visit. Getting a table for Ella is great, but a hand-painted table from her Grandmother makes it even more special. Have I mentioned that you can see her art at Neiman Marcus every Christmas? Ella has a very talented Grandma!

Also, some Ella fans got together and surprised us in a huge way: an iPad loaded with all kinds of educational games, videos, etc. Along with it, an extra charger, a case, etc. Can you believe it? That was way over the top and much appreciated. We’re excited to use it with her. I’m sure her therapists will be excited to use it too! That is such an amazing gift because it is such an investment in Ella and her future.

This last week, we got together with friends to go to the Trail of Lights put on by the Denver Botanic Gardens. Unfortunately, it was one of those nights when Ella was not feeling well and so that made it a bit stressful. But our friends were understanding as we rushed through to enjoy the lights in the chilly weather.

Although we only know each other virtually, another CDH mom and I have been in communication. If you can remember, please lift up Elijah in prayer. This week will be his 4th time going in for surgery to have his diaphragm repaired. Elijah and Ella will be having diaphragm repair surgery on the same day this week, just in different hospitals! The world feels small sometimes! And although we wish we didn’t, we can relate to how hard their journey must be too, so please lift up this family in prayer!

Thanks to everyone who’s local and offered to help with dogs, meals and visits while those near and far away will be lifting Ella in prayer. The outpouring from everyone is so appreciated and it helps to know that we are not alone on this journey.

For now, we’re just enjoying our family time before we head to the hospital on Wednesday.

2 Corinthians 4:16-18 (NIV)
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

It was a bit crazy with the holiday, but this week is much more relaxed.

When we began discussing scheduling for surgery, it was a bit of a surprise that it would be 3 weeks out. Apparently, all the older kids in school that have elective surgeries book them ahead of time for the holiday break. So, Ella’s surgeon was completely booked. In the meantime, we had 3 doctor appointments the week before Christmas with different “ologists” to discuss the latest happenings.

We met with the GI doctor on Friday, Dec 17th. Ella has lost more weight, so we have increased the MCT Procal to 2 packets per day versus 1 packet per day. Also, we’re adding more veggies and proteins to the blended diet. With these two changes, we’re hopeful that her weight will increase. She was 14.3 kilos this time last year, she is now 12.6 kilos (went from 31.5 pounds to 27.75 pounds).

I did look at the chest CT scan with her GI doctor. He thinks that there is a lot of bowel and portion of her colon in her chest. He stressed about watching for any further symptoms, as a portion of the bowel or colon could get a kink or be cut off from circulation depending on what exactly is going on. So far, Ella seems to be fine. We have a follow-up appointment at the end of January, post-surgery to see how feeds and other GI symptoms are going.

As with all the surgeries in the past, Ella’s system takes a while to get back in the swing of things and therefore, you almost have to start over with feeds. On that note, I asked about what they would feed Ella during our inpatient stay at the hospital. They do not allow food from the outside and they do not make the blenderized diet. The nutritionist told me that there is a canned equivalent of the blended diet called Compleat that we can request. I asked if she would call in a prescription to get a trial pack of the canned food. I received it already and plan on trying it about 5-6 days before Ella’s surgery. I want to know if she tolerates the canned version of the blended diet. This way, I will have a better gauge on her recovery. If she’s having problems eating, I’ll know if it is food related or pure surgery recovery.

On Mon, Dec 20th, we met with her surgeon to discuss the upcoming procedure. Again, we reviewed the CT scan and he agreed that there is a substantial amount of bowel in her chest. He did show us the patch that Dr. Kays put in and how it does look like it is still intact. For that reason, he will likely leave that patch in place and simply repair and add more patch to resolve the latest hernia. Of course, he won’t really know until he is in surgery but that is the plan for now. Also, he plans to check her nissen and make sure that it is intact and tight enough. At this time, we were given the surgery date of Thursday, January 6th, check-in early that morning.

On Tues, Dec 21st, we met with her cardiologist. Ella had an EKG performed and then we taked with him about the latest pass-out spells. When we did the recent echo during Thanksgiving, he was out of town. In between, I had sent him a few pictures of Ella’s collateral veins popping out. Although it is intermittent, I wanted him to see that they were making an appearance (the collateral veins are Ella’s back up system for blood flow that grew over time when her SVC was completely occluded. When they appear, this usually means higher pressure somewhere and is related to blood flow). Of course when we went that morning, the collateral veins were not present. But he started to discuss that although the echo and EKG look fine, you wouldn’t necessarily expect that having bowel in her chest would cause pass out spells. And since an echo and EKG do not tell the entire story, he wants to have Ella go to the cath lab before the big repair surgery. He will make sure that the SVC is not occluded, do some management in her SVC area, test pressures throughout (for example, lung artery pressures). The pressure information will help the anesthesiologist and surgeon to know what they are dealing with on the day of surgery. Plus, it will ensure that blood flow is maximized. Ultimately, he thinks that it will help her recover from the big surgery faster than if we do not intervene. Right now, the cath lab procedure is scheduled for Monday, January 3rd, check-in at 7am.

It is not optimal to have the cath lab on Monday and surgery on Thursday, so we’re still trying to see if we can move the cath lab procedure so that we can go get admitted to the hospital, have the cath lab, recuperate and stay at the hospital for the surgery (versus checking in/out within a few days). That is still up in the air and at this point, we may not have an option to change it.

One other procedure that we have really wanted to get completed for Ella is an MRI, to check out her brain development. If you remember, the last MRI she received was in the NICU in December 2007. They noted abnormalities, but emphasized that baby’s brains are not yet mapped. However they told us that if we do note any developmental delays, we should have a repeat MRI completed. Most of you know Ella in a virtual way, so you don’t grasp the degree of her delays. Trust me, she is very delayed; anyone who has spent time with her will agree. She’s made good progress with occupational therapy and physical therapy, but we’ve made no cognitive or speech improvements over the years of therapy visits. For that reason, we’ve wanted the information from an MRI so that we know which therapies she will most likely respond to. We know that her brain has undergone some damage, but if we have more information on which parts and to what degree, we’re hoping to structure her therapies to give her the best chance for comprehension and communication. With this in mind, we have an MRI ordered and are still working out the logistics of having the MRI done while she is under anesthesia for the cath lab procedure or the surgery. We should know more about that part by the end of the week. I expect that getting the news from the MRI is not going to be uplifting, but again, we know it is necessary to give her the best chance of improvement.

On that note, Ella still does not understand Christmas. We tried wrapping gifts and showing her how to unwrap them; she has no interest. This is really tough to swallow and makes the holidays a bit tougher on the emotions. All the ideas of holidays, children getting excited and waking you up at the crack of dawn to open gifts – it is just another day to Ella.

I have not taken the chance to upload holiday photos that were taken or to share what Ella received for Christmas (we were very blessed by some Ella fans), but I will try and do that by the end of this week before we journey into a heavy week of hospital procedures, surgeries and a long stay.

On that note, it is really humbling to ask for help, but we’ve realized that it means so much during these times. Our hospital stay in California last April really brought that into focus. Our family, friends and lots of people that we did not even know gathered together to minister to us. That was a first for us and it made a huge difference. We have 2 large dogs that could use babysitting, meals and visits at the hospital are great too. Some have offered to help in the past, but each of you knows your current schedule and what your time and resources will permit. So for those of you that are local, please reach out to us in the coming days by clicking “Contact Us” at the top of the blog and let us know if you feel prompted and how you’d like to help during our upcoming hospital stay (that was SO HARD to type).

Romans 8:28 (NIV)
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

In the meantime, this song has ministered to my heart…

Walk by Faith
by Jeremy Camp

Would I believe you when you would say
Your hand will guide my every way
Will I receive the words You say
Every moment of every day

[chorus]
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Help me to win my endless fears
You’ve been so faithful for all my years
With one breath You make me new
Your grace covers all I do

yeah, yeah , yeah, yeah, yeah, ya

[chorus]
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Well I’m broken- but I still see Your face
Well You’ve spoken- pouring Your words of grace

[chorus x2]
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Well hallelujah, hallelu
(I will walk by faith)
Well hallelujah, hallelu
(I will walk by faith)

I will walk, I will walk, I will walk by faith
I will, I will, I will walk by faith

I wanted to make sure to write a new post and update everyone on the last two weeks.

Once we checked out Ella’s heart and lungs via echo the day before Thanksgiving, the next theory for her pass out spells was due to reflux. Per the last post, we ended up increasing her dosage of Zantac and adding Children’s Pepto (calcium carbonate, three times per day). We went through Thanksgiving and a few days after without any pass out spells. There were times that she came close, but she did not pass out. Also, I tried to dial back on ingredients in her blenderized diet and go very basic.

Then, the Tuesday following Thanksgiving was her first appointment for therapies to start. From that point, she made it clear that she was not going to tolerate occupational, physical or speech therapy. Normally, I leave the room with the two dogs and let her “play” with her therapists. She does great. Now, I was not allowed to leave the room or be out of sight.

Over the past weeks, she had become increasingly clingy. Even without therapists, she has been extra fussy. I would feed her or change her diaper and need to wash my hands or walk to the kitchen (she can still see me) and she just loses it. I rush and hurry back, fearful of a pass out spell. Or she would finally get distracted by playing with her computer or watching a video, but then there is extra whining in the background. Normally, just holding her helps it to cease, but sometimes not. In other words, she is whining constantly. To me this means that whatever underlying medical condition is present, it was starting to worsen.

Some days we were lucky with no pass out spells. Other times, it would happen a handful of times throughout the day. Because the Zantac and Children’s Pepto did not seem to be curing her of the pass out spells, we went ahead with the upper GI & small bowel series that her doctor wanted her to have completed.

We spent all last Wednesday at the hospital for the test. They asked me to arrive for check-in at 10am with an appt at 10:30am. They were running behind and we did not start until 11am. Initially, they placed 180ml of barium contrast dye via her g-tube and took a bunch of xrays in different positions. Of course, she was not enjoying this process. The good news: her nissen looked intact so it did not appear that reflux was occurring.

Then, we had to go to the reception area and come back for xrays throughout the day. First, it was 15 min, then 20 min, then 35 minutes, then an hour. Normally, it takes about 4 follow-up xrays and 2 hours for a healthy kid to go through this test. Last time in June, it took 4 hours. By the time 6 hours was rolling around, I was getting concerned too. The nurses and xray techs were asking if I had to change her diaper at all. Nope. No barium dye diapers yet. Since it was late in the day and they were pretty sure it had reached her colon, they took one last xray of her upper chest. That seemed strange to me, but then again, nothing is ever too weird when it comes to Ella.

Last Friday, Dec 10th, they called to let me know that they noted something suspicious on the films. To make sure, they asked us to come back for a chest CT scan on Tues, Dec 14th (this morning). They wanted a high density scan which takes 20 minutes, so this meant that she was going to need general anethesia for the scan. We went through the normal process of no food and water and drove to the hospital. They asked us to check in at 10:30am. As usual, they were running behind and did not come out to get Ella until 12 noon. She was finally under anethesia at 12:30pm with the scan starting. By 1:15pm, she was in the recovery area and they came to get me. Unfortunately, they waited a bit too long because Ella was already awake with a nurse trying to hold her to calm her down. The nurse had no idea how much Ella does not like nurses and that she was worsening it by holding her. But I applauded her efforts and as I walked in the room, Ella motioned for me. One thing is for sure: she knows her Mom and she wanted me.

The nurse mentioned that Ella’s heart rate seemed very low – in the 50-60s – so they gave her some Rubidol via IV to help increase her heart rate. I explained that 50-60s is common for her when she is deeply relaxed and asleep. I guess the staff was unsure, so they administered a medicine to help increase her heart rate. I held Ella for about 45 minutes in the recovery area. She was still fussy. Normally when she comes out of anesthesia, some cuddling keeps whining at bay. But today, she was still whining while I was holding her. These are the moments that I wish my daughter had speech, so she could tell me how and what she is feeling. It is just a helpless feeling as a parent to feel like there is nothing you can do to make her feel better. By 3pm, we were home and I was giving her some Pedialyte. She had not been given any fluids or food since the prior evening. As of now, she has had three large boluses of Pedialyte and we will try some food via g-tube before she goes to bed this evening.

Around 5pm I misplaced my cell phone and realized that I left it in the car. Sure enough when I picked it up, there was a voicemail from the hospital. The voicemail confirmed a nightmare: Ella has reherniated and there are loops of bowel above her left diaphragm.

We’re supposed to receive a call tomorrow to let us know the next steps as far as when Ella will be admitted for surgery. They do not consider it emergent in nature, as this has probably been slowly happening and worsening over the past several months. It couldn’t have happened too long ago. She just had bowel surgery in April (and they removed all of her bowel, repaired it and put it back into her cute body). Plus, she had the same two tests in June (upper GI with small bowel series and chest CT scan) and this did not show as an issue. So sometime between July and now, this likely occurred. I wonder if it happened with all her violent retching every day over those months; I guess that is one theory. If nothing else, it probably explains why she has been having the pass out spells, first coming on slowly and then increasing in frequency. It can’t feel good to have bowel in your chest!

Please pray for Ella – that she will remain stable, have a successful surgery and a quick recovery. And please pray for us as her parents. It is so hard to get this news. Our daughter has been through so much and continues to endure so many challenges.

Here is a poem I came across recently from another mom that struck a chord:

I Had Plans

I had plans…
such perfect plans…
of how our life would be…
A perfect job, a perfect home…
a perfect family.

It seemed like it should be that way…
(of course we’d have our trials)
But most days would be sunshine…
Laughter,love, and smiles…

And then, as I held pictures…
of my child, not yet born…
And heard the words “a heart defect”…
My own heart became torn.

First came the “Hows”…
Then came the “Whys”…
Then came the question…
What if my child dies?

Hiding for a little while…
trying so hard just to cope…
Wondering will she be okay?
living each moment with hope…

I thought that perhaps, someday…
I could breathe with a sigh of relief…
And know that she will be okay…
And let go of my grief…

It seems that moment doesn’t come…
As each day starts anew…
I realize I must start each day…
By giving her to You…

Whatever Your plan for her life is…
I trust that it’s written with care…
And You are God no matter what…
(Even when life isn’t fair)

So I will really LOVE today…
So thankful that she’s here…
And give her too many kisses…
And try to let go of my fear…

I’ll try not to be so resentful…
And remember that life is for living…
I’ll smile just knowing, she’s here with us now…
And hold tightly to each day we’re given.

~Stephanie Husted

The past few weeks have continued to go well with the blenderized diet. We’ve had only a few retching moments that caused something to come up. In the past several months using commercial formula, we were having that challenge multiples times per day, so that part is better. The unfortunate part: weight loss. We dipped below 13 kilos or 28 pounds, but contacted the dietician who told us to double the amount of MCT Procal powder to 3 tablespoons per day. This adds extra fat and calories without adding fluid. We just weighed her on 11/24 and she was 13 kilos. We’re hoping to see that number increase within the next few weeks at our next check-up.

The biggest concern, especially the past couple of weeks, is pass-out spells. We mentioned that we were having some on the last post and that we’d given Bumex. But it seemed like the Bumex wasn’t doing much and the frequency of the spells was continuing to increase. We’ve had several per week, sometimes multiple per day. Since we resolved that fluid overload was not the cause as the Bumex wasn’t doing much (last dose on 11/20), we next thought it might be her SVC. We have not been to the heart cath lab since Sept 2009, so maybe it was related to her heart. We had six pass out spells over the 5 days prior to Thanksgiving. Sure enough, the doctors were concerned enough to bring her in for an urgent echo to check her SVC and pulmonary hypertension on Wed, 11/24, the day before Thanksgiving. When we arrived at the hospital, we were not sure if we would be admitted and have to stay there for Turkey Day. Fortunately, Ella checked out great. The gradient pressure in her SVC was 2, versus 5-7 on the last echo. That is very little pressure and great flow which means her heart stents and blood thinners are working great. There was no evidence of pulmonary hypertension. So we were relieved at these findings plus that we did not need an admission. Although it still leaves a mystery, why the sudden increase in pass out spells?

One other theory is reflux. Apparently, the reflux can cause a lot of pain. So when she clamps down to cry real hard, it can place lots of pressure on her belly and the reflux can initiate, shooting up her esophagus. I’ve never experienced reflux but countless others have described the pain it can bring, almost to the point of not being able to breathe. One other interesting clinical symptom that just came on the past week: bad breath. This can also be another symptom of reflux. Literally, you will brush her teeth, mouth, tongue and right afterwards, her breath still smells. We do think her nissen has loosened since her last nissen surgery in Sept 2008. There are a few ways to check and quantify the reflux: an upper GI (see if they can see the barium dye going into her esophagus) or a ph study which includes a hospital admission and a tube up her nose for 24 hours. We’d prefer to try other, less invasive tests first.

All in all, we’re just hoping the pass out spells go away or are greatly reduced. It is scary to have your kid turn purple/blue, eyes roll back, and lose consciousness for a brief time. It is normal for toddlers to have behavioral breath holding spells and I think if Ella did not have serious underlying medical conditions, I would chalk it up to that solely. With her medical history, her doctors are not convinced that it is just breath holding spells either. And it is strange because we can go months without any and then all of a sudden they will come on with such great frequency. The past has shown us that there is an underlying medical reason.

So, we discussed a few things: we started her new blenderized diet at the end of October, but sure enough, pass out spells have increased. Could she be allergic to something and/or is there an ingredient in the diet that is causing more reflux? Ella already takes Zantac which is used to treat gastroesophageal reflux disease (GERD), a condition in which backward flow of acid from the stomach causes heartburn and injury of the food pipe (esophagus); and conditions where the stomach produces too much acid. But we asked if the dosage could be increased. Sure enough, instead of 30mg per day, she can have up to 40mg per day. We opted to try that out. Also, they mentioned that calcium carbonate might not help as it is short acting, but certainly won’t hurt (Tums). It turns out that Children’s Pepto Bismol tablets have the exact amount per dosage that work for Ella. She can have 400mg, a max of 3 doses per day. So, we just dissolve in a syringe and give to her with 3 of her feeds throughout the day. Once we left the hospital, we bought some and started administering on Wednesday evening along with the increase in Zantac dosage. She has not passed out since Tuesday night and it is Sunday. We’re hopeful that maybe these two slight changes are making enough of a difference. Just to be safe, we were supposed to be headed to the hospital tomorrow morning for an upper GI. This will give us a picture of her tummy and its function with the barium dye placed in it. Now that we have not had any pass out spells with the medication adjustments, we’re opting to wait it out a bit longer.

We had our first solo date night. Boy, that was a treat – it had been WAY too long.

Also, we had a nice, mellow Thanksgiving besides the 4 canines!

On a positive note, Ella is cruising. Not on a ship, but walking around this house like nobody’s business! It’s really fun to see her progression in such a short amount of time. We figured that we would post a couple videos, so you can see for yourself. She’s also starting to pay attention to the dogs more and found a new game to play with Dad. Enjoy!

And finally, I felt prompted to share a portion of a blog that I’ve been following lately. The baby was born with a congenital heart defect and was just released from the NICU. The father wrote these words on their blog the other day and I couldn’t share the same sentiments any better:

With Thanksgiving coming up tomorrow, I’ve been reflecting a lot on the gifts that God has given our family, and I can’t stop thinking about the most unexpected ones. My thoughts lead me back to what I wrote in my post on September 17th while Bowen’s chest was still open from surgery, only days after his cardiac arrest. These words feel as true to me now as they did when I wrote them.

“A friend told me that I’ve seen too much, but I’m realizing that I might not see enough. Everything I’ve watched happen in this hospital, all the pain I’ve felt, is deepening my faith, strengthening my marriage, and molding my character. As I lovingly stared into Bowen’s eyes just before midnight, my face only inches from his chest, I thought, ‘This love is an awesome mess.’ I know I’m not the first person to think or to say something like that. Many great works of art have titles that are reminiscent of those words. I believe it’s because tension is the place where the worst of life and the best of true hope meet to unveil our eyes to God’s artistic work of redemption. What a mighty and creatively loving God we serve. He allows us to know great pain, so that we can know the greater pleasure of trading it in for purpose.”

This Thanksgiving, because of all we’ve been through, we have even more to be grateful for. I’m not suggesting that we’re thankful for pain and loss, but that pain and loss can make us thankful.

We’re so sorry to all the loyal Ella fans that have been patiently waiting for an update. Wow, there is so much to catch up on. Where do I begin?

Health-Wise
Ella has been pretty stable.

I noticed in mid-to-late September that Ella was doing her pass out spells on me again. Slowly they started to occur more frequently, then once per day, then multiple times per day. Based on my past experience in working with her pulmonologist, it is typically fluid retention. So on Sept 23rd, we gave her a dose of Bumex. Within a few hours, she had some huge diapers which confirms that was likely the case.

We went to see the GI doctor the next day on Sept 24th. At that point, we were still having trouble with Ella using EleCare. So, he prescribed MCT Procal powder to try and ease Ella’s retching and discomfort with feeds. He wanted me to try all three formulas with the MCT Procal powder to see if it would help; he was suspecting that she might have dumping syndrome. On the other hand, I was skeptical with the dumping syndrome diagnosis, but I just knew that feeding seemed to be very rough these days. At this visit, she weighed 13 kilos (28.6 lbs). I did express frustration that no matter how I seemed to feed Ella (multiple bolus feeds, water diluted in the food or straight water flushes, food pump at night or not, etc, etc, etc), it just seemed like nothing I did was making much difference. He noted that if none of the formulas with MCT Procal were successful, he’d like to hospitalize her for more tests and worse case scenario, change out her G-tube for a GJ tube.

Two and a half weeks later, we went to get Ella’s SVC checked via ECHO and see the pulmonologist. Even during that routine day long visit to the hospital, Ella was retching several times throughout the day. On the lunch break, we left the building so I could get some real food and I fed her. I had to stop 3 times within 10 minutes while driving, just to clear her airway from her retching up food and secretions!

The ECHO showed that the SVC pressure was a bit higher between 5-6 versus 2-3 on the last ECHO in late June. Nothing too alarming – but not headed in the right direction. The more alarming finding was that she weighed in at 13.7 kilos (30.14 lbs). There is no way that she would gain that much weight in 2.5 weeks. Her pulmonologist agreed that it was likely fluid retention. I explained when I had given the Bumex and that she had come close to passing out again, but had not quite yet. I was going to wait until that happened. Sure enough as I write this post, she passed out twice just the other night on Nov 4th. So the next morning on Nov 5th, we had to dose her with Bumex again.

The pulmonologist was more concerned with the retching, especially because it was not dry retching. We were having secretions and formula come up. This presents a high risk for aspiration and gave him great concern. So he pushed for the GI plan related to feeds. I told him that we were trying EleCare with MCT Procal, then Peptamen Jr with MCT Procal, and Nutren Jr with MCT Procal. So far, the EleCare with MCT Procal was not working. He let me know that he would call the GI team and apply pressure that this was a problem that needed to be worked out sooner versus later.

At this point, I was pretty fried from the constant discomfort and retching after each feed. Most of you probably don’t know what that experience entails, but trust me, it is very tough and heartbreaking to see Ella so miserable. So I decided to get online and do research. There have to be other parents that are experiencing the same issues. After surfing for awhile, the first significant finding was a method to wean children off of tube feeds. This is something that many parents try all the time with our conventional therapy methods, but the reason this was different: it was an approach used in Europe that is very successful and different than our approaches here in the US; most children go from 100% tube feeds to 100% oral feeds within 2-3 weeks. Wow!

As far as Ella is concerned, she still has some medical causes for using tube feeds and we have not even been able to get tube feeds to work successfully, so she is not ready to be weaned off of tube feeds. BUT, I found tremendous hope in these findings for the European approach – when Ella is ready, we are going to try this approach. I agree with the philosophy much more than the approaches I’ve experienced via therapists so far. As a bonus, I not only found this on another blog – but a blog for another CDH girl that was struggling with tube feeds – so now I can connect with her mom when I decide to try it with Ella. On that note, I did reach out to this mom and one of her questions in her email to me was asking if I had tried a blenderized diet. What is a blenderized diet?

I started googling and came across tons of blogs with tube fed kids that use this and report less retching than commercial formulas. Basically, it is taking regular foods and mixing it in a high speed blender to nourish your child. Ella had never had real food for her nutrition and it sounded like lots of work each day, but if it would solve her discomfort and retching, it would be worth it. As a side note, I’m going to post information about blenderized diets as well as weaning of tube feeds in another section of the site for parents that want to read the detail and educate themselves on an approach that might help their kid. For the rest of you, I’ll spare you the details.

I found a few recipes and was prepared to contact her GI doctor and nutritionist to ask if they would let me try this option with Ella. Although Ella had never consumed real food for her nourishment, she had an allergy test this past summer and passed with flying colors. That is usually the biggest concern. When I called the nutritionist at the hospital, she confirmed that many parents used a blenderized diet and noted that the hospital already had a recipe that I could try!@#@?? Excuse me, why had they not offered this option in the past? Here they wanted me to try 3 formulas with MCT Procal and if that didn’t work, they were prepared to hospitalize her and do invasive tests and even mentioned switching to a GJ tube. If I thought about it too much, it really irritated me. So, I just accepted the standard recipe, tried it and knew that I would likely change some of the ingredients if Ella started to show any promise in this approach (example: recipe calls for vegetable oil, but olive oil or flax seed oil is more nutritious). So what happened?

The retching was significantly less, but not eliminated completely. When we saw her pediatrician on Oct 27th and gave him an update, I mentioned how the morning feeds seemed to be worse. He had a great idea: give Ella more soluble foods in the morning (banana, milk, oatmeal) and use the other ingredients later in the day. He thinks that her system is slower and doesn’t function as optimally as it should. Giving her proteins and other more challenging foods after no food overnight might be causing the challenge with the morning feed. Sure enough, he was right. His other two suggestions: use honey instead of karo syrup/agave nectar due to how the stomach breaks down those foods. Use the MCT Procal powder because it is a good way to add a high amount of fats and calories with just a tablespoon of powder.

-We’re not feeding with the food pump at night.
-Ella is being fed 6x per day; 1000ml of blenderized diet and 300ml of free water flushes.
-I make two different blenderized foods: breakfast and lunch/dinner meals.
-Real food caused constipation for Ella, so we add Miralax to the blended foods.
-We’re using milk, grain and fruits for breakfast.
-We’re using protein powder, baby food meats, baby food veggies, flax seed oil, honey.
-We’ve added apple cider vinegar since that is known to help GERD.
-We’re adding MCT Procal to help give a high amount of fats and calories to the food.

Even as I type this, we’re still tweaking things to try and come up with the optimal schedule/ingredients. But I have to say, this is the most pain-free eating experience that Ella has had so far. She has always detested feeds and would whine when she saw the syringe. Now, she is often times smiling and active after feeds. Praise God!

She has maintained at 13.7 kilos and is scheduled for a follow-up ECHO and pulmonology visit in the next few months. We’ll see what happens, especially if we have to keep using Bumex!

Developmentally
I feel like I almost have a different kid. She went from a baby to a little girl by the end of October.

First, she was starting to stand on her own, and continued to crawl around and climb the stairs at the beginning of October. She learned how to climb back down the stairs too. Then all of a sudden by the last week of October….drumroll please…..Ella started to take her own steps and walk! Currently, she still requires an object to pull to a stand, but then will let go, take a few steps and fall down! It happens so fast that we have not had a chance to catch it on video. But as she strolls toward the holidays and continues to get stronger each day, we’ll be sure to capture video and share with all of you.

It just seemed to happen like a light switch – much faster than we all expected. To give you an idea: her physical therapist saw her in mid-October, skipped one week of therapy and came back 2 weeks later. She had all these exercises printed out for me to work on with Ella. She came to see her and Ella took a few steps. Her therapist was flabbergasted and proud that all those exercises she printed out were no good, all at the same time! She was in shock and agreed that Ella has taken us all by surprise!

Also, Ella decided that she does not want her binky or frog. I thought that would be a long time habit, hard for her to break. Literally just one day, she decided that she wanted nothing to do with it. Leading up to it, I had taken the binky away during the day because she would constantly chew on them, breaking down the material into small chunks that would come off. As a choking hazard, I decided to only give her a binky when she went to sleep. After a few weeks of that trend, she just decided that she didn’t want the frog or binky at all.

Along with that change, Ella started waking up at nights with typical toddler behavior. She wanted to be held, rocked and put back to sleep. Yet half of the time when you would lay her back down, she would wake up and scream again. In the past, you could hand her the frog and binky to self-soothe. Not anymore. So after a week or so of this behavior and many sleepless nights, we decided to let her cry it out. I think that is hard for any parent, but especially hard when the pulse oximeter is beeping loudly along with the crying over the monitor. But we decided that if the pulse oximeter was going off too much, we would go into her room and turn up the oxygen, but that Ella needed to figure out a way to soothe herself. The first night, she cried and screamed for an hour straight. It has gotten easier, but is still a challenge. I think if she could walk and talk, she would ask me to sleep with her. This is why it seems to be a typical toddler thing.

Since Ella is not chewing the binky throughout the day, she decided that she wants to chew her hands. So the skin breakdown on her hands and face around her lips and cheeks is really bad. That behavior along with the dry, winter air is causing her poor hands and face to be so chapped and red. Ouch! We keep using Desonide and Burt’s Bees Wax (we are limited in our choice of products because of the oxygen and because Ella is likely eating whatever we put on her hands and face). We just keep applying and applying…

To get my attention, Ella has been grabbing for my face to turn it to look at her. The only problem: sometimes her hands catch my eyes or earrings. Or she thinks that the harder she uses her hand, the better the response. Well needless to say, it hurts a lot of the time. Yikes, this one is tough to get her to understand.

Not much happening on the verbal/communication front these days – most of the developmental strides are with starting to walk and the “big girl” moves like ditching the binky. Oh, and also just the wonderful, 3yr old tantrums that are fairly constant when she does not get her way. It seems to be on a regular basis each day, and the only thing that makes it probably a bit more challenging: Ella doesn’t know how to communicate. So sometimes it is hard to give her what she wants or to negotiate with her, when you don’t know what she wants and are unsure of what she understands. Hopefully that will improve as the years pass…for now, it just makes those 3 year old tantrums even more fun!

Other Family Updates
Yes, we are cuckoo. We added another member to our family of the canine variety. We decided that it would be good for Lola to have a sister to play with each day. We went to the Denver Dumb Friends League and rescued a very cute German Shorthair Pointer named Lucy. Since she already responded to her name and had such a cute name (Ella’s cousin is named Lucy), we decided to keep the name. So now we have Lola & Lucy. From the start, these two dogs bonded and are the best of friends. It is really cute and disgusting to watch them play, groom and sleep together. Lola is happy to have a buddy to keep her company all the time.

Grandma West and Richard came out for a visit over Halloween. Josh had earned some time off from work for all the late nights he’s been putting in, so that worked out well. We had a great time as a family going around to various landmarks in the Denver area and surrounding mountains. We ate at the Denver Chop House and visited Downtown Denver, the Denver Zoo, Evergreen, Blackhawk/Central City, Garden of the Gods. And of course, we used the RV to transport everyone comfortably. Grandma had a great time helping us get in the ghoul spirit and doing various crafts as well as dressing up Ella in her tutu and passing out candy to the trick-or-treaters. And of course, we had to play the Wii.

Finally, a highlight of October: we found someone to provide respite care! Respite care is basically babysitting for special-needs kids (one of our benefits from Medicaid). We’ve had Medicaid since September, but have not had anyone to provide respite care. In this case, respite care can be provided by anyone that we trust to take care of Ella (family member, friend, etc.). One of Ella’s therapists from the school district found out that we did not have anyone and offered to distribute our need to all the teachers and para educators in the school district. Sure enough, a young grad that takes care of moderate to severe needs kids at the local high school offered to babysit Ella. We’re so excited. Definitely a blessing to our family. We’re looking forward to date nights again — we haven’t had one since Aug 2009.

Another blessing this past month: another mom of a CDH kid emailed us after happening upon Ella’s blog. She thanked us for Ella’s story and simply shared that her daughter was born at Shands, her healthy was sketchy at times, she was developmentally delayed, but she has exceeded all of their expectations: she is now 15 and a freshman in high school. Getting that email was so cool. Sometimes when you are in the midst of the day to day trials, you forget the bigger picture. I know we’ve provided hope to parents that are just getting the diagnosis of CDH. But to hear from another mom of a 15 year old CDH survivor just provides hope for our journey and Ella’s future days.

Josh had this upcoming Monday off, so we decided to get in the RV and head to the mountains for a change of scenery, last minute. Although it was warmer in Denver and we probably should have stayed there to enjoy it while it lasted, we opted to go camping for the weekend. That is where we are writing this post. Looking out at the gorgeous mountain scenery and enjoying family time.

It was kind of funny – Josh started to feel a bit of altitude sickness when we first arrived due to lack of oxygen. Then he realized that he could create his own trip to the oxygen bar! Thanks to Ella for letting Dad use some of your oxygen. After about 30 minutes, the headache and nausea subsided.

Looking forward to this holiday season…we will try to update with any new developments sooner versus later!

Great news for our family: Ella was approved for Medicaid. This is such a huge relief (the wait was worth it!). Along with having the peace of mind that Ella will always be covered for her medical needs (whatever our primary insurance does not cover, Medicaid will kick-in and cover), it means that she can start to see some of her prior therapists for PT, OT, etc. That is great news.

Therapies with the school district have started albeit slowly. We have yet to meet all her therapists that will be involved, but fortunately, Ella seems to be enjoying her primary one. The ECSE (Early Childhood School Educator) has a lot of experience with preschool children and has used a slow and steady approach with Ella. She comes to visit 2 times per week.

We’ve missed seeing her prior therapists from Developmental Pathways. So far, we’ve been able to have her PT come back and visit her. It’s been great and she noted how much stronger Ella has become in the 2 month stretch of not seeing her. Ella is definitely crawling, pulling up to a stand, and even taking her hands away for brief moments to try and balance on her own, free standing.

She is so mobile and loves to crawl and stand. So today I felt motivated to change around her play area. Now, I’ve elevated the TV on a table and she stands to watch the TV; just another method to encourage that behavior. I do feel like maybe by Christmas or Valentines Day that Ella might be walking!

We took Ella to the park over Labor Day weekend and set her in the swing. That was the first time that she has been in a swing at the park. It was a beautiful Colorado day and the park was vacant – everyone else was likely on vacation so it was a perfect tranquil setting for Ella’s first time. She liked the swinging motion.

We’ve continued to have sleepless nights and lots of retching. We know something isn’t right, but it’s tough to diagnose the problem. We’ve tried adjusting the feeds in every which way – more diluted, less diluted. More volume, less volume. Using the food pump at a slow rate versus a bolus rate versus not at all. Although we did notice that we have not been successful getting to full feeds without using the food pump overnight. Now that we’ve been able to work up to full feeds the past couple of weeks (1300ccs per day; 1000 formula, 300 water), Ella has been feeling miserable. She wakes up throughout the night with the food pump and every time I feed her during the day, she feels nausea and retches. Now since her nissen is a bit looser, she is not only retching secretions but formula as well. She tries and tries to manage it on her own, but then finally can’t and so it forcefully comes out to where it is overflowing from her mouth. This carries a large risk for aspiration.

Full feeds are good for trying to get Ella to gain weight, but there is a downside: her pulmonary system is being challenged. We think that she may be fluid overloaded. The main symptom: the quick pass out moments almost every day again versus every once in a blue moon. Sure enough, she will get upset and hold her breath. Within 3-10 seconds, she is turning blue in the face/hands/feet, extending her body in a contorted, stiff position as her eyes roll back and she passes out. It is so scary!!!

As before, additional fluid has been the culprit before so we decided to give her a dose of Bumex. I got 3 huge diapers after the dose, confirming that she may have been carrying more fluid on board. Since I gave the Bumex a few days ago, I have not had another pass out spell. Another possibility is occlusion with her SVC because she should be able to tolerate full feeds like she has in the past without experiencing pulmonary side effects. We have an echo and pulmonary appointment on Oct 12th.

Fortunately, we had an appointment with her GI doctor this past Friday, Sept 23rd. Ella had lost weight again, down to 13 kilos or 28 pounds. She is 3 feet 1 inch tall. After discussing all of Ella’s various symptoms with the largest issue being nausea and retching, we came up with a plan. Her GI doc thinks that she may have dumping syndrome.

…a condition where ingested foods bypass the stomach too rapidly and enter the small intestine largely undigested. It happens when the upper end of the small intestine, the duodenum, expands too quickly due to the presence of hyperosmolar (substances with increased osmolarity) food from the stomach. “Early” dumping begins concurrently or immediately succeeding a meal. Symptoms of early dumping include nausea, vomiting, bloating, cramping, diarrhea, dizziness, rapid heart rate and fatigue. “Late” dumping happens 1 to 3 hours after eating. Symptoms of late dumping include weakness, sweating, and dizziness. Many people have both types. The syndrome is most often associated with gastric surgery.

The current formula she is using, EleCare, is all pre-digested. It is the most hypo-allergenic food and we went back to it in an effort to relieve her instestines. Between the food switch and a GI medicine, sulfasalazine, we have seen the constant diarrhea, mucous and blood in the stool pretty much cease. We haven’t seen any more blood and rarely we still see the mucous. So, the food has been good and easy for her intestines to digest. What I learned on this recent appointment with the GI doctor is that EleCare is also a formula with the most osmolarity (as described above). In other words, everything is so broken down that it can be heavy with all the parts broken down which makes it a harder food for her stomach. It signals her small instestine to expand too quickly due to the increased osmolarity, which can cause dumping syndrome.

We’re not sure if she has it or not, but figured that we would try something to see if we can make her more comfortable. If you add MCT Procal (A neutral-tasting powder containing protein, carbohydrate and fat high in medium chain triglycerides), it helps slow down the emptying of the stomach contents into the small intestine. We are going to try adding it to EleCare for 2 weeks. If that doesn’t improve things, we are going to try it with Peptamen Jr and then Nutren Jr (since these foods are not as broken down, they have less osmolarity). These are harder on her intestines because it is not all broken down already, but easier on her tummy. If adding the MCT Procal doesn’t work with any of the foods, Ella will be hospitalized briefly to get a gastric emptying study and dumping syndrome test. Finally, the GI doctor mentioned a last resort: changing out her G-tube for a GJ-tube. A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum of the small intestine. In other words, GJ tubes are used for children who cannot tolerate feeding into the stomach. This is definitely a last resort – there are many drawbacks. I won’t bother mentioning all of them because I am going to think positive thoughts that we will avoid a GJ tube. Pray for Ella – that just adding some MCT Procal to her current food will do the trick!

For a couple of days, our hands were full! Our neighbor rescued a dog and asked us to help out for a bit. It’s sad because it seems like the dog was just left in our neighborhood. We canvassed the area with signs and no one called. After spending a few days in the lost and found at the Dumb Friends League, we checked back and she has been adopted. Although it made my life crazy for a couple of days, I think you can tell that Lola did not mind!

We recently heard of another CDH family that will be having a baby boy in a few weeks, Baby Abel. The family happens to live nearby, probably a 5 minute drive. We’re hoping to be able to provide support in the coming days. Please check out their blog and keep this family in your prayers.

I’m reading a book which is so enjoyable. Partly because I relate to the story: a family who’s faith is tested when their life has been turned upside down – their 6 year old son is an an accident and they are not sure if he will make it. Not that I have a 6 year old son that was in an accident; rather, the author eloquently describes some of the feelings and thoughts that I have often encountered during our 3+ year journey, from the start of hearing the news that Ella would have a birth defect and likely would not live. Those of you who have been readers for a long time have seen the miraculous hand of God at work during our journey. And this book shares the same miraculous work of God as their son does live, but can’t walk, talk or eat. It is good to read a book based on a true story and have someone else state things that you know in your being to be true…things that just make it a bit easier to keep going and persevere. And even though it is hard, trust that He has a plan. After all, isn’t that what faith is truly about? As I feel prompted, I will share portions of the book that I think may bless others. Here is a poem the Dad wrote during the son’s ongoing recovery:

Alex cannot walk
Jesus walked on water
Alex cannot talk
God spoke the universe into existence
Alex cannot breathe
The Holy Spirit is the breath of life
Therefore. . .
I will not look to the world
But to the WORD
I will not look to my son
But to the FATHER
I will not see with my eyes
But with my HEART
I will not fall victim
To the prison of circumstance
I will worship my God
And abide in His hope
Let it be. . .

We all have a story…we all endure pain in this life. So whether it is close to this story or a completely different one, the truths from God are universal and apply to each one of us. It reminds me too, that we are not on this journey alone.

Hebrews 10:23 (NIV)
Let us hold unswervingly to the hope we profess, for he who promised is faithful.

Great news! We are still finalizing all the details with the school district, but Ella does qualify for school services in our home due to her medical needs. That makes me very happy. She needs occupational therapy, physical therapy and speech therapy. So we will be getting likely 2-3 hours per week from licensed providers in our home that work for the school district. Since we are still finalizing the IEP, services have not started even though school has started.

Apparently, getting the verbiage on the IEP is very important. I secured an advocate from ARC (a non-profit organization that supports families with disabled individuals) and she has been an invaluable resource. The advocate and the school district are still at odds as far as some of the verbiage in the IEP. But once we can work that part out, we should be good to go. I know that therapy in the home setting is the best choice for Ella right now based on her health issues. I hope that someday she can be healthy enough to be around kids every day and I do think we’ll get there, but I know that she is still too medically fragile for a classroom setting right now and so do her doctors!

We’ve still had GI challenges with feedings. Once we saw more army green colored bile coming from Ella’s g-tube, we backed off of food for a day or two. Now, we’ve started slowly introducing food back into her diet (more diluted with water than normal) and are working to get our way back to full feeds. Apparently, the break for her intestines did wonders. It is like starting over and having her feel good, no discomfort with feeds, etc. I can tell if I’ve added too much food or pushed her too hard because I get discomfort, fussiness and/or loose stools. So, it’s a challenge but at least giving her a break is an option for now. It also seems to have slowed down and/or eliminated the angry dark green bile. I guess that is her system’s way of telling us to back off or else!

We’re waiting to hear on her Medicaid Waiver approval/denial. We did get a letter from the state noting that they received Ella’s Medicaid Disability application and that they do consider Ella disabled, according to the state’s definition. That is another step in the right direction for securing Medicaid. Did I mention it is hard to read a letter that states that your child is officially considered disabled?

This verse hit me recently:

Psalm 37:3-6
Trust in the Lord, and do good;
dwell in the land and befriend faithfulness.
Delight yourself in the Lord,
and he will give you the desires of your heart.
Commit your way to the Lord;
trust in him, and he will act.
He will bring forth your righteousness as the light,
and your justice as the noonday.

Along those lines, Ella and I spend time in her room in the mornings after her first feed. We cuddle and listen to the local Christian radio station together for long, lazy mornings. God always uses songs to speak to my heart. It is His way of telling me to continue to believe…to not throw the towel in when I have those really challenging days…to continue believe in Him and His promises no matter what the physical world and circumstances might tell us.

I love my little girl so much…and I know deep down that He has a plan for her.

This song is by Kutless. You can listen to it below (there is an intro advertisement).

What Faith Can Do
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think its more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don’t have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That’s what faith can do!
Even if you fall sometimes
You will have the strength to rise

First, I want to apologize to all the Ella fans out there that receive our email updates. I’m so sorry about inadvertently filling up your inboxes with old posts. That is the first time that malware has touched Ella’s site. If it happens in the future, we’ve learned and hopefully can avoid blasting everyone with all those emails!

Things have settled a bit in our camp, especially since therapies ceased. It’s felt quiet with just me and Ella hanging out!

We went to see the pediatrician since Ella’s third birthday, so we could check in and get caught up on all her vaccines. In coming days, the pediatrician wants to monitor her weight gain, try our best to keep her from getting sick and return in September for the flu vaccine. The last time we weighed in, she was at 13.2 kilos. It seems lik she is gaining weight back. I’ll be interested to see the next time we visit a doctor.

At the request of her GI doctor, I took Ella to an allergist. When she was diagnosed with Eosinophillic Colitis in early July, it is typically caused by a parasite or an allergy to food or medicine. Well, she tested negative for parasites in the hospital. She was not taking any new medicines, but they were not 100% sure about the food. I questioned a food allergy since all she takes is formula! Plus, all her symptoms with her GI issues stem from her surgery in early April. Why would she be fine on other formulas for months and then all of a sudden be allergic to them, right after surgery? But, we wanted to eliminate it as a factor.

So, we went to an allergist for testing. They did the skin prick test for peanut, egg, milk, wheat, fish mix (cod, flounder, halibut, mackerel, tuna), soy and corn. Thankfully, she tested negative for all of these items. The allergist recommended another test called a “patch test”. They place the same items on a patch and you come back to the doctor 48 and 72 hours after they initially place it on. This tends to be a more sensitive test for eosinophills, which is what they found elevated in Ella’s colon. But since it takes 3 visits to the doctor’s office within 1 week, I left a message for her GI doctor to see if he wanted us to take that step. I doubt that she is allergic, so I’d like to avoid that test, if possible.

One thing that the allergist did raise that I had not thought about before: just because you do tests for allergies and they all come back negative, it still may not solve your mystery. Ella could have intolerances to items listed above, such as milk, that can be in formulas. Even though she is not allergic, she may be lactose intolerant. Therefore, she may get an upset stomach, bloating, gas, etc., yet not be allergic. Unfortunately, there is no way to test for intolerances. If patients report those symptoms and does not test positive for allergy, it is labeled as an intolerance. Since Ella can’t communicate, it makes it hard to know if she has an intolerance. One thing is for sure: feeds are still challenging. She does not like them and whines when she sees me approaching with the syringe. Not every time, but sometimes, she cries after a feed. This tells me that there must be some type of pain involved.

Even the past week or so, I’ve noted some questionable green bile coming out of her g-tube before her first feed in the morning. I’m not as concerned about an amber color bile, but when it becomes green, it starts to look like early signs that something is not right with the bowel. Plus, her stools are still not normal. Sigh…we’re going to need to watch this closely. It is not a good thing to see.

Also, I’m not sure if I mentioned on a prior post or not, but Ella’s reflux seems real bad these days. I feel like it has been worse since the hospital visit in early July when they did the endoscope. I think it may have loosened her nissen. Now, when she gets mucoids after a feed, there seems to be a lot more. Plus, it has the color of formula whereas before it used to be clear. This is not good because 1) it means that there is greater risk of aspiration and 2) the contents would not just be mucus but may contain food which could give her an infection in her lungs.

We have our appointment with the school district this week. I’m very curious to see what they are going to propose for Ella’s educational needs. In order to prepare, I also joined the ARC of Aurora which is a non-profit agency that focuses on helping families of children with developmentally disabled children. They have an advocacy program. An ARC advocate will be at the meeting this week and is armed with all the legal knowledge, so that we can push the school system as much as possible, to get the most for Ella. Preschool would normally be 10 hours per week and include OT, PT and speech. I expect them to come up with some way to deliver those services at my home, since Ella cannot be exposed to other children. The team that visited us in June should have an IEP (Individualized Education Plan) written out and they are going to review with me. For those that don’t know, the passage of the updated version of the Individuals with Disabilities Education Act (IDEA 2004) made parents of kids with special needs even more crucial members of their child’s education team. Parents can now work with educators to develop a plan — the individualized education plan (IEP) — to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them. So if I don’t agree with what they are proposing for Ella, then I can appeal and go through the mediation process. Wow, all this advocacy work for your child is exhausting!!!

On a similar note, we finished all of the paperwork required for the Medicaid Disability application process and are still waiting to hear whether Ella qualifies. We should know by the end of October, but hopefully sooner.

As all of you know, Ella has certainly made progress as the months and years have passed albeit slow. One area that seems to remain about the same is her learning. In other words, I think we are really feeling that the delays we are seeing with learning, speech, communication, and overall developmental delays stem back to the diagnosis and findings on the MRI in the NICU. For a refresher, here is what the medical report stated concerning her neuro status:

Ella required sedation and pain medication for a very long period of time. She weaned off Versed after 105 days and Fentanyl after 136 days. Suspected seizure activity was noted in August 2007. EEG on 8/2/07 showed non-etiological cortical cerebral dysfunction, potential lower seizure threshold over R temporal and L central regions, no sub-clinical seizure activity was noted. Infant was loaded with Phenobarbital and clinical signs of seizures stopped. Phenobarbital was stopped on 12/7/07 and Ella has no further evidence of seizure activity. Her repeat EEG on 1/7/08 showed some background slowing and impedence, likely related to fluid around her brain. Multiple cranial ultrasounds were normal. Head MRI in 12/19/07 showed global cerebral atrophy and focal encephalomalacia in the L parietal lobe.

I know that is a mouthful to digest and I remember being overwhelmed the first time hearing the news way back in early 2008. The NICU doctors explained that there was no way to know if we would see the impact of these findings because baby’s brains are not mapped. Since she was still very young, we were hopeful that we could make huge strides with therapies, as many of her fellow CDH friends have done (walking, talking, eating, learning overall). But, I think the reality of these findings from way back in the NICU are resonating more and may explain Ella’s developmental delays.

There is no prognosis for Ella medically, nor a road map of what to expect with her developmentally. Literally, we have to take each day at a time. Some days are better than others, but I’m not sure the pain of it all ever really goes away.

Thanks for all the support and continual prayers for our little miracle.

Proverbs 3:5-6 (NIV)
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.

It’s been a few weeks since our last post.

Mostly, we’ve just been trying to work on feeding and Gi issues. Overall, it has improved. We had quite the challenge getting the food pump to work – Ella is too mobile. I had this suspicion the last time we left the hospital and I was correct. Once we had her home for a couple of days, she would start to move and literally the IV pole holding the food bag and food pump (stands over 5 feet tall) would come tumbling down, almost wiping out Ella a few times. I decided that scenario was not worth it.

From there, I tried to switch and feed her more at night and just do small feeds several times per day during the day. Anytime I would use the food pump at night, even if I was just delivering water, she would wake up and fuss intermittently all night. That got old, real fast. Plus, Josh has been thoroughly enjoying his new job (praise God) and so when I’m up all night with Ella, I have no reprieve the next day. With most of us, that is fine for a few days. But after days and days in a row, it can make you a little squirrly.

Now, we’ve worked up the bolus feeds so that we are having feeding sessions about 7-8 times per day. We’re also trying to keep her upright for at least 15-20 minutes after a feed to help the food drain from her tummy. This seems to be working ok although I know Ella is still uncomfortable. Her reflux has gotten worse – now when she retches after a feed, we are sometimes getting food coming up too which has never happened before. This means that her nissen is getting looser and it puts her at a greater risk to aspirate.

I guess I’m trying to say that this is still not an optimal feeding schedule for either one of us, but it seems to be the best compromise with life at this point. I have to say, feeding my daughter is one of my least favorite things to do since it usually involves a high degree of discomfort for her. I look forward to the day when this part gets easier ~ it’s always been a challenge for us.

Along with the feeds, her stool has improved too. I don’t know that it would be considered “normal” (still some mucous), but I have not seen any blood. So whether it is the food itself or the sulfasalazine (new GI medicine) or a little of both, she seems to be in a better place than we were a month ago.

She’s not sleeping at night like she used to in the past – 9-10 hours at a time. Now, I’m lucky if we get 6-7 hours. When we went for her GI follow-up appointment with her doctor, I asked if sulfasalazine could cause insomnia. He noted that is not a side effect he normally hears about, but it doesn’t mean that it could not be playing a part. The GI doctor wants us to stay on our current regiment, increase the amount of food versus water in the diet (increase calories) to help Ella gain back some of her weight. So far, she gained less than a half a pound in 3 weeks (went from 13 kilos to 13.2 kilos, about 29 pounds). He wants to see if we can improve that number. Also, he wants Ella to go for allergy testing. We plan to see him again in September to review and reassess where Ella is at with her weight/feeds/stools. Please pray for the Bun to get better sleep and increased feeding tolerance.

A fun surprise over the past couple of weeks: I will leave the play area to walk into the kitchen. When I come back around the corner, Ella is crawling more and more. She seems to have this newfound freedom with crawling all over. The real surprise is that our physical therapy exercises have been paying off – almost too well. I will come back around the corner and a few times now, Ella is climbing the stairs! She is getting the hang of going up them but hasn’t quite figured out how to get down. Because we have an oversized curved staircase, it makes it tough to block it off. Although I’d rather not impede any urges that Ella has for mobility. I guess it just means that I have to really be on my toes now!

In between the new job for Josh, he also went and had surgery last week on Thursday to repair a hernia. He is resting and trying to recuperate so he can return to work tomorrow. This led into a very relaxed and mellow birthday celebration here at home for the Bun. We tried to see if she was interested in the cake (even just playing with it), but nothing so far. On that note, our friends had a beautiful birthday cake made for Ella and delivered it to our house the other day. So sweet and tasty – Dad and I enjoyed and ate Ella’s portion for her!

We took a short video and sang “Happy Birthday” to the Bun, but the microphone got covered up unexpectedly so you can’t really hear us! Oops!

It makes us a little sad that she still doesn’t really understand that it is her birthday or that anything special is going on. Emotionally, it is hard to accept that it might be years before Ella engages during a song on her birthday. And then there is always the fear that she may never respond. In the scheme of things, God has made her just the way He wants her, but it would be unrealistic not to admit that our parental desires for “normalcy” still exist.

Since Ella turned three, we no longer get support from the Early Intervention Program (federal program), so no more therapies for the Bun which is such a bummer because she needs them! The school district is not going to be able to provide occupational therapy, speech therapy or physical therapy, but is more focused on her education needs. We should hear in mid-August as to whether or not the school district is going to be able to provide any assistance to us. Aside from that, we’re still trying to see if we can get Ella on Medicaid through one of the waiver programs, but so far, she has been on the wait list for 2+ years (Medicaid would not only cover therapies, but kick-in to assist with medical needs that our primary insurance does not cover). I’m in the process of applying for another waiver program that was established recently ~ we’ll see if she can get benefits sooner using this avenue instead. We’ll probably know in the next 30-60 days. Please pray for a miracle – we could really use some support for services.

The biggest praise on our hearts and minds is Josh’s new job – he just loves it. I’ve never seen him so excited and motivated to go to work. I know it is a new job and he is still in the honeymoon period, but I have to say that this is the best thing that has happened to Josh in a long time. It’s been a nice change of pace for life, although it’s made my personal life a bit more hectic. I’ve been trying to work too, about 5-10 hours per week. It doesn’t sound like a lot, but it’s an intense type of work (data analysis) and I’m pretty worn out just taking care of Ella and Lola. Please pray for my perseverance through this chapter of life.

And in some ways, I can’t believe it has been 3 years since Ella was born. Yet mostly, it has felt like an eternity. One thing is for sure- all of you out there virtually and in person has made this journey so much more rewarding and helped us to endure the times. Thanks for the all the continued support and prayers.

John 16:33 (NLT)
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.