“I’ll take that as a rhetorical question.”

Yup, that’s what I asked and that’s what the doctor said. But before I go any further, let me share some details that led up to this conversation.

Some of you have asked if we wanted to have more kids. I think there has always been a desire to, but it has never come about in a positive way. We tried for five years before having Ella and after a rough time dealing with a miscarriage the motivation wasn’t real high.

Tina and I have talked about it off and on, but we hand’t really committed to it. We discussed it more seriously last Christmas thinking that, if we’re going to give it a go we need to soon as time is of the essence. We will both be turning 40 in 2012 so in our minds, this was our last hurrah.

Tina had discussed it with her doctor earlier this year and he had recommended we go to a fertility specialist if we really wanted to try again. This would be our best bet considering the challenges we’ve had in the past, plus the fact that Tina was not on any regular cycle.

We hadn’t really considered anything too invasive when it came to getting pregnant. We figured if it was meant to be, it would happen. Well, the new company that purchased my previous employer the first of the year offered great benefits for fertility assistance. With that in mind, maybe this was the “meant to be” that could make it happen.

Tina was planning on setting up an appointment with the clinic, but I was working from home that day so she didn’t get a chance to before we went to lunch together. We went out to grab a bite, and after she asked if we could stop by the store on the way home. So we ran into the store and I noticed she was going down the feminine product isle. Needless to say I started heading another direction when what I saw in her hand caught my eye…

A pregnancy test.

Uhhh…we hadn’t gone to the clinic yet and she was supposed to make her appointment that afternoon. What the freak? Where the tests on sale or something???

Tina then informed me that while her cycle hasn’t been regular, she’s never gone this long without having it. Wow…could it be!!??!! I was trying not to get too excited, which is why Tina originally wanted to take the test on the down low, but there was no getting around it now. I knew too much! HAH

After getting home, we booked it upstairs and I waited for Tina to perform the preverbal “peeing on a stick”.

We waited…longest 5 minutes ever.

It looked…positive?? This test was kinda defective, so we weren’t 100% sure, but we were pretty sure. The next morning Tina took another…and yes…it showed positive!!! Holy cramole!!!

This was huge…WAY HUGE…and it happened RIGHT BEFORE WE WERE GOING TO CALL THE CLINIC!!!

So, we’re pregnant, but that’s also real scary for us considering our history. After losing the previous boy, Tina’s doctor had given us hope that the defects were random lighting strikes and were not likely to happen again. We were still hesitant, but it was the words he followed up with that really stuck in my mind, “It would be my honor to deliver your next baby”. Wow…what a statement.

Instead of calling the fertility clinic, Tina had scheduled a follow up appointment with her OBGYN. We wanted to verify the pregnancy and make sure things were ok, at least as far as we could tell.

We went to see her doctor and they did an ultrasound and performed some other initial tests (7 weeks along). The doctor came in to review things with us and the first words out of my mouth were, “How did this happen??!!”. “I’ll take that as a rhetorical question”, he replied with a smile.

Well…I knew HOW it happened, but it just seemed very unlikely considering how long we had tried AND the fact that Tina was not having a regular cycle. So it really was “meant to be”!

So far, all looked good with the pregnancy, but it was really too early to confirm any other potential defects. This would happen during the 12 and 20 week checkups. All we could do in between that time was trust and pray. Trust that God was fully in control, and pray that our child was whole.

The 12 week checkup came: All looked good and all tests that could be verified came back negative. So far…so good.

The 20 Week checkup came: This was very nerve-wracking as it was at Ella’s 20 week ultrasound where we found out she had CDH. The radiologist who had been with us thorugh all our previous scans was no longer at the pratice, so this made the process even more agonizing. Ultrasounds are supposed to be a happy exciting time for a mother and father, but it never has been for us. From the time we walked in the room, it was very emotional and the tech didn’t know all of our history.

She began the test, and SLOWLY gave us the news…all looked good…EXCEPT…she didn’t get a clear picture of the heart. The baby was turned and the spine was blocking the shot. Oye, we needed this info, but the baby was not cooperating. So we left the exam room, but once Tina’s doctor heard we couldn’t get the image, he pulled some strings and got us back in for another ultrasound within an hour.

How did the second ultrasound look? All looked good, heart, lungs, DIAPHRAGM!! And…IT’S A BOY!!!

So are you ready for the real curveball…

Tina is due in less than 7 weeks!!!!! October 23rd is her due date. We waited SO long to even tell family. Most didn’t know until we visited them in California when Tina was already 24 weeks along! The other side didn’t find out until the family reunion we hosted, when she was 28 weeks!

At this time, the boy continues to show all signs of being healthy. We’re very excited, shocked, blown away, thrilled, nervous…the list goes on.

So…that’s the “How did this happen??!!” news.
🙂

Speaking of visiting California, we took a two week trip to the West Coast during the 4th of July holiday. Our close friend “Aunt” Karen came along with us to both help with Ella and enjoy some vacation as well.

It was a fantastic trip which included Ella’s first time to Disneyland and the beach! Ella did so great at Disneyland and was more engaged that we could have hoped. Her first ride was the Jungle Cruise and she was just enamored! So cool as we had no idea how she would react or if she would even enjoy it. We even took her on Pirates of the Caribbean. Yeah…Dad pushed a little to get her on that one, but she still did good.

We also had a great time at the beach. At first, Ella was hesitant to even touch the sand, but after awhile she shoved her hands and toes right in!

On the way back to Colorado, we took a little detour in Las Vegas for a couple nights. We scored a two bedroom suite at Vdara and we all enjoyed the view.

On top of Ella having a lot of firsts on the vacation, Karen did too. It was her first time to Disneyland, the California beach, and Las Vegas! This made the trip that much more fun and extra special.

Life was pretty bananas once we got back from vacation. Ella’s nanny of the last year was moving back to Kansas so we had to find a replacement. We were hosting Tina’s family reunion, on her dad’s side, in early August which we had to get ready for. We had a rental property that we had to turn for a new tenant. PLUS we celebrated a major milestone.

What is that milestone I speak of: Ella Renae West turned 5 years old on July 24th! What day to celebrate a miracle girl and the 5 amazing years she’s been with us. Praise God for all the blessing and challenges we’ve gone through. As it just so happens, Ella’s nanny shared the same birthday so we all celebrated with a trip to the zoo, balloons and a birthday cake.

We also got Ella a little swimming pool which was a first for her. Very fun.

Knowing that the nanny was leaving us, we’d been looking for a replacement for weeks. Tina had screened dozens of nanny’s and after that we interviewed quite a few in person as well. It was so challenging. We could not find the right fit for Ella. Some didn’t have the desired skills and others had either accepted another offer or even flaked out on the interview! It was so disappointing, and it was all coming down to the wire.

Side note: God works in funny ways in these kind of circumstances. Just when we think things are not going to work out, HE works them out better than we could have imagined.

With that said and long story short, Tina’s mom has agreed to move out to Colorado and take care of Ella! What a deal! Right now she’s staying with us, but come October, Tina’s mom and stepdad will be moving out to Colorado. Ella’s grandma has been taking care of her the last few weeks and she’s doing FANTASTIC! It’s SO great having family here to help out. What a blessing!

Right before Tina’s mom arrived, we had the Snyder family reunion. What a wonderful time to catch up and enjoy family. Most of the time was just spent in the kitchen or on the patio talking. The weather TOTALLY cooperated too as we had 75 degree days during the time everyone was here.

We even took out the whole family in the RV to enjoy the sites around Denver.

After the reunion it was time to start getting the house ready for the new bundle. Tina has really been in a nesting mood and I’m doing what I can to get things swapped around for her.

Our main guest room is going to be the baby room so we had to shuffle a few things around. A bunch of furniture was moved out of Ella’s room. We moved Tina’s office downstairs, and we turned her old office into a guest room. The biggest change came for Ella as she has graduated from her crib right into a queen size bed! Heck of a move up for the kiddo. We did add side rails to keep her from rolling off but she’s not even shown signs that she would.

Either way, she’s taken right to having a big-girl-bed! So that segway leads right into this question…

How’s the BUN doing??!!!

Overall she’s doing great. She had a GI appointment in the third week of July. They wanted us to increase her caloric intake so we added more prescription juice to her diet. The juice/water combo will give her another 250 calories per day. We’ve seen the weight gain over the weeks so it is working.

Ella is also making good progress with new foods being introduced. Previously, it was just a couple items like Cheetoes and such being rubbed around her mouth. Now she is actually eating some small quantity of food! Very small amounts, like an ounce or so, but still she is letting the therapist take a spoon and put it in her mouth! Right now, the items she’s eating includes:

• Graham crackers dipped in melted ice cream
• Pureed chicken noodle soup
• Cheddar cheese soup
• Brown gravy with extra salt!
• Ranch dressing
• Mushed bananas blended with maple syrup

While she doesn’t actually eat the following, she still likes cheetos, triscuits, wheat thins and veggie sticks run across her bottom teeth, including the french fries from In-N-Out.

School has also started up again, which Ella doesn’t go to in person, but some of her therapies have now increased. She now has:

• OT is now up to 2x per week
• Speech is 2x per week
• Physical therapy is 1x per week
• School District is 2x per week

Something we’re also very excited about is a dedicated communication device for Ella. It has now been funded and we have received it! There were some challenges around the software that was delivered with it, but hopefully we’ll get that resolved soon. This way the therapist to get it set up and we can start moving forward.

Ella has also recently figured out how to open doors! While this is great progress for her, it is now posing a challenge as she gets into the pantry and could take a tumble down the basement stairs! I guess I had to baby proof the place at some point, it was just delayed for her, but out just right for the new bundle on the way =).

One other thing to call out about our 5 year old is that she has acquired quite a shoe fetish. She constantly wants to keep trying on shoes, and if you don’t get the right ones, she’ll make you keep trying till you do. Heck, she even wanted to try on cousin Pete’s shoe’s during the reunion!

One bit of not so good news is that Ella has started having a dry cough over the last 2 weeks. It’s becoming more frequent and is now paired with some retching. We’ve also increased her O2 as she hasn’t been saturating as well. We’re guessing that the increase in her fluid intake could be to blame but we’re not 100% sure just yet. We’re trying a couple things, like going back to her old regiment, to try and rule things out, but we’ll just have to see. We’re hopeful that it’s just that and nothing else major. Please pray that it is nothing more and we can find the right balance to have it resolve on its own.

It’s been a heck of a journey the last 5 years with Ella. A new journey begins soon and we’re not sure how Ella is going to take it. She doesn’t understand or even recognize that mommy is pregnant. I think Ella will only realize that she has a brother once he is taking mommy and daddy’s attention away from her. Hopefully she’ll behave no different than any other 5 year old, which could be a good or bad thing. =)

Thanks for letting us share our journey with you. Blessings to you and yours as we approach the fall season and the anticipation of our new arrival!

P.S. On September 3rd, Tina and I celebrated 22 years of being together. =)

Hey there Ella fans. It’s been awhile since I posted. Tina’s been doing the lion’s share of keeping you all updated, but I felt prompted to give an update.

Ella was in a real honeymoon period right before our last post. It felt like we had things dialed pretty good and overall she was doing well. I think it’s always my hope that, after a big surgery, that we’ll get a good long break between any issues. It’s also a pretty typical trend of Ella’s to not let this be. We’ve had some decent stretches over the last 3+ years that were relatively uneventful, but nothing that really gave us a chance to escape into what one would think as “normalcy”.

I share this to say that this stretch only lasted a week, and right after our previous post, Ella starting to show new signs of trouble. All day last Sunday (2/20) she was grunting throughout the day, almost like she was constipated. The weird thing is that she wasn’t. She was also showing signs of discomfort after feeds, which caused her to pass out. There were symptoms of what we thought was reflux as well. Ella would often start coughing after a feed, as if something was in the back of her throat. All these symptoms were a bit disconcerting.

This trend continued to intensify throughout the next day (Monday) which really started to cause concern. Ella passed out a total of 4 times on this day. I was feeling anxious enough to request that we head off to the ER to get some tests done, but Tina didn’t feel she was in a real emergent situation, plus we did have multiple checkup visits already scheduled that week. I trust Tina’s gut in these situations and know that she had a good feel for Ella’s state. We agreed to see how Ella behaved the next day. Tuesday came and unfortunately it was the same as Monday: grunting, coughing, and, once again, passing out 4 times.

The one thing that did give us some solace was that there were moments where Ella was behaving normally. She was consolable, but there was no denying that something was going on inside her and it was causing severe discomfort.

On Wednesday Ella had a followup appointment with a neurologist. She had an MRI of her brain when she was in the hospital in January. This was the appointment to discuss details around the results. I was at work that day but Tina emailed me a list of questions that she was going to ask the doctor. Just consuming the reality of the questions we were going to ask was overwhelming. To give you a taste, here’s the list we came up with:

• How does Ella’s brain compare to a “normal” brain her age?
• Is the global cerebral atrophy the same or different than the NICU scan?
• When the atrophy shows that the brain is smaller than it is supposed to be, does it stay the same or can the rate of growth change? In other words, is she a certain percentage smaller, like 40% smaller and we can expect that to remain constant or can it change? Can it get better or worse?
• Are there any environmental factors that impact global cerebral atrophy?
• I know you cannot predict and Ella can always surprise us, but I’m trying to get a realistic perspective of what I can and cannot expect my daughter to accomplish as she gets older. What do other children look like with this diagnosis, as they age? What types of things are they able to do or not do? Can you share some examples of different outcomes you’ve seen.
• The best plan of action: continue OT, PT and Speech Therapy and try to make the connections for simple tasks?
• Do we IQ test at school age, like 6-7 years old?
• Is this the type of diagnosis that goes along with Mental Retardation?
• Do we ever need another MRI? or only if we see further neurological symptoms? What are symptoms that I should be aware of to indicate that further testing is needed?
• What are the next steps for Ella (what is her health care plan neurologically)?

I highlighted the the item above because it’s the question that, in my opinion, stood out more than any other. We knew since being in the NICU with Ella that she sustained some brain damage. We also knew that it was pretty bad, but it’s never been clarified how bad. With this latest MRI though, we were hoping to get more insight.

The images below show the structural part of a normal brain and the part of Ella’s brain where her injuries occured, likely due to lack of oxygen. But the MRI does not tell you how the brain functions. The neurologist compared it to opening up the hood of a car and looking at the engine and its various parts. Doing that is not going to tell you how the car is going to run, but in can give you some insight. More importantly, they use developmental scales in various areas to test children and see how their brain is developing. Here are some other tidbits we learned:

(this is a normal MRI image, grabbed from Medscape.com as an example)

(this is Ella’s recent MRI, frontal view, reversed right to left)

• You can see the part of her brain that died off due to a stroke in the upper left side of her brain (seen on the right here).
• Ella’s brain is about 20-30% smaller than it should be for a child her age due to global cerebral atrophy. The white matter should be tight like cauliflower, pressed all the way to the edges of the skull. See all the extra fluid and how it is open and flowery? That is the global cerebral atrophy that makes her brain smaller.
• Ella’s head circumference is on the growth chart; this means that her brain has grown as she has aged. The doctor thinks that it will continue to grow, based on the NICU MRI and the recent one. This means that unless we see neurological symptoms that are alarming, we do not need another MRI and her brain is expected to grow and maintain a 20-30% deficiency as she ages.
• The corpus callosum is the main transverse tract of fibers that connects the two cerebral hemispheres. It is made of more than 200 million nerve fibers. The primary function of the corpus callosum is to integrate motor, sensory, and cognitive activity between the left and right hemispheres. Ella’s corpus callosum was the area most impacted by lack of oxygen. It has thickened since birth, but it is not the thickness that you normally see for a child her age, so she basically doesn’t have the amount of nerve fibers that would be ideal for learning and growing developmentally. This means she will be able to learn certain associations (like she has with walking), but learning simple tasks and associations takes lots of repetition, therapy, etc. and there is no guarantee which types of tasks she will be able to grasp.
• Since the MRI only shows the structural part of the brain, the neurologist pulled out the Denver Scale (a test for screening cognitive and behavioral problems in preschool children). The scale reflects what percentage of a certain age group is able to perform a certain task. Tasks are grouped into four categories (social contact, fine motor skill, language, and gross motor skill) and include items such as smiles spontaneously (performed by 90% of three-month-olds), knocks two building blocks against each other (90% of 13-month-olds), speaks three words other than “mom” and “dad” (90% of 21-month-olds), or hops on one leg (90% of 5-year-olds). Ella scored between 12-15 months old in gross motor skills and 6-9 months old in the social contact, fine motor skill and language areas.

Tina received assurance from the neurologist that she expects Ella to continue to move forward and make progress, albeit slow, just like she has over the past few years. The doctor also noted that society no longer uses “mental retardation” for classification these days, but instead would use the term “developmentally delayed”. However, the neurologist also made a point to state that the professional community does not use this terminology any longer either because it gives the impression that Ella is simply delayed and that she will inevitably gain these skills, which she very well may not. So, the doctor labeled her as “intellectually and developmentally disabled”.

Knowing that Ella will continue to move forward, but not at a rate allowing her to catch up with other kids, Tina pressed the doc for a more specific answer even though it would probably be tough to swallow. After talking back and forth Tina pinned the doctor down by asking this question: “So when my daughter is 16 years old, will she probably only function at the level of, let’s say a 5 year old?” The doctor nodded and responded, “That is a reasonable assumption. Put it this way, Ella will not be 16 years old and functioning like a 14 year old”.

Ugggghghhh….the reality of this was like a punch in the gut. I knew this punch was coming, but I just didn’t know how bad the punch was going to hurt until now.

OK…so before you go off and start thinking about telling us how doctors don’t know exactly the outcome, and that she could surprise us, and that we never know where she’ll end up, and it’s in God’s hands, and it’ll be ok, and that she’s amazing…well, your right…all that is right…and we know this truth. BUT the reality of the moment is that we have an amazingly sweet precious little girl with a brain injury that will affect HER and US for the rest of our lives. We don’t know what the future holds, but the impact of this revelation provided by these details is deep.

Seeing Ella deal with her physical issues along with this news just really wrecked me. It’s been real heavy for Tina and I to process and I thank God that we can at least cling to each other through it.

On top of this, Ella continued to have her spells after the feeds so I ended up taking Thursday off work to help out. It can be so absolutely exhausting taking care of Ella, and I’m only doing it part time! I can’t believe the Superwoman Wife that I’m married to that does this full time and also maintains any sense of sanity!

Ella had a GI appointment scheduled for Friday morning but after consulting with the docs earlier that week, they requested that we see the surgery team as well. The GI docs were concerned about the possibility of issues related to the procedure in January which is what prompted them to have us consult with surgery. In addition, they had Ella take a chest xray prior to Friday, just to make sure her diaphragm was still intact.

While driving to work on Friday morning, I talked to Tina as she drove Ella to the hospital. Our conversation was thick with emotion around our daughter’s current situation. I was less than a mile from work when I was consumed by my wife’s mood and my own despair. My current state of mind convinced me to call off going to work that day and instead head to the hospital to be there with my family.

Upon arriving I hugged on my little girl while the GI doc talked through her symptoms and some possible ideas hoping figure out the cause of her issues. Her chest xray looked good – diaphragm still in place. There was no clear direction on what Ella was dealing with, and, as usual, she kinda stumped the doc on what path we should take. On top of that, we had already tried a variety of things to help Ella out and the majority of his solutions covered those same actions. Reviewing Ella’s condition with the surgeon also yielded the same results.

They did agree that Ella should come back in for an upper GI and small bowel series with contrast to determine if there are any obvious reasons for her issues. Tina will be taking Ella in tomorrow (Monday 2/28) for this test that will literally take all day.

Even through all this we decided to take a break on Saturday and escaped in the RV with some friends. We went up into the Evergreen area and had lunch at BeauJo’s. It was nice to get away and Ella did pretty good with minimal episodes.

As of today, it seems that Ella’s symptoms have subsided a bit (Thank God!), although she did pass out once this evening. We’ll see how the test goes on Monday. Hoping they don’t find anything that would require another surgery.

A couple items to share on the lighter side:

• Ella walked over to the cat and pet her on the back for the first time. It was so awesome to see Ella do this on her own and with such intent.
• While Tina was sitting on the couch, Ella decided to pull herself up onto Tina’s lap with minimal assistance. Once again…very cool.
• Ella is now able to climb onto her bounce and spin zebra on her own!

It is the moments like these that are so incredibly cherished.

Heavenly Father: Thank you for your sovereignty and for being the creator of the universe! We know you have a plan for Ella Renae, and it is not to harm her, but your plans are to give us hope and a future. Lord, instill in us that hope so that we may trust in you daily. We praise you Lord for our sweet child. Bless her and heal her Lord. We pray that your Kingdom will be greatly impacted by her life. We pray these things in Jesus name…Amen

I’ll leave you all with something that God put on my heart a few weeks ago during my own personal spiritual wrestling: The verse isn’t “Be still and FEEL that I am God”, it is “Be still and KNOW that I am God”.

Yes, it’s true! Ella was released from the hospital on Friday afternoon!. That was only 10 days in the hospital for a pretty big surgery! I know I’m saying ONLY 10 days, but Ella’s pretty keen on hanging around hospitals for a month+ at a time. This was a real surprise and we’re incredibly happy to be home.

Grandpa George drove Tina and Ella home from the hospital on Friday. You can see that he was in charge of pulling along the precious cargo.

During the first 24 hours back from the hospital, Ella had done pretty good. We’re still having challenges around her bowels moving things along, so we continue the dance with Miralax, Senna, and Magic Bullets. She had pretty huge blowout last night, but she still hasn’t been stooling consistently.

Late Saturday afternoon, Ella starting showing signs of discomfort and her belly was looking a bit more distended. It looked like things were backing up again. We don’t want to push her body too hard with the stool softeners and stimulants, but we also need to keep things moving along.

After a round of Senna and still no evacuation, we opted for her second suppository for the day. This was during the time we we’re trying to put her down for the night and she just wouldn’t settle and she was obviously uncomfortable. Finally, about 45 minutes later, the brownies were baked and came out of the oven. With Ella experiencing that relief, she was content to sit next to me and the pooches until I put her down at midnight. As I type this it’s 12:40am on Sunday and she’s finally asleep.

I have to say that having all the support we received from friends and family in the form of thoughts, prayers, visits, dinners, gift-cards, balloons, stuffed penguins (not real ones of course), teddy bears, dog watching, and snow shoveling meant so much during Ella’s time at the hospital.

Your generosity and kindness provided us comfort during this challenging time. Thank you for being there for us!

Please continue to pray that Ella’s GI tract will start to behave itself and we can settle into a solid groove at home again. We know that through all of it our Hevenly Father is in control and our job is to simply trust. Not that it’s really a simple thing at all when you see your kid go though all she does, but we know our Lord is Sovereign.

Thank you Jesus for bringing our miracle girl though this hospitalization safely. We pray that her body continues to heal and the issues with her bowels will resolve. We pray for peace and comfort for Ella in the coming weeks. Thank you Lord. Amen.

Last Thursday evening Ella had very watery stools for about three hours after her 8pm feed. We decided to hold off on giving any more food and with that she slept through the entire night. That was the first time she slept solid since we introduced food again. After some brainstorming and looking through previous blog entries, we came to the conclusion that the issue was mostly likely caused by too much food volume too fast. The docs tried to get her to take full feeds (250ccs) within a few days. It was just too quick, so the idea was to start over with smaller amounts and see if we saw the same reaction from Ella’s gut.

Yesterday morning Ella still had her central line in. We had thought that if she could move away from needing any IV access that we could just pull it and be done. But, with all the loose stools, unbalanced electrolytes, and not knowing the exact cause, we opted to get a PICC line placed. The fact that Ella hadn’t had anything to eat since 8pm the prior night meant she could go right to radiology have the line put in. But, the team that placed the PICC line was backlogged, it was on a Friday, and PICC lines aren’t done over the weekend! Well, nice that the Chief Medical Director happened to be in the PICU that morning. He was able to get us slipped in front of the queue!

With the successful placement of the PICC line, they were able to remove her central line later in the afternoon. After this line was pulled, we felt a little more relaxed with letting Ella be a crazy monkey in her bed. She just keeps spinning around, sitting up, tangling all her wires, which requires me to keep reminding myself that it’s a privilege to keep untangling them. =)

We started her food back up as well yesterday at 80ccs. Then bumped to 120ccs, then 160ccs. Unfortunately, she still had a very loose stool that evening and even another time in the middle of the night. This time, we’ve considered discontinuing her dose of Reglan, thinking that it may be contributing to the loose stools. So today is the first day without the Reglan. We had a feed at 8am (120ccs) and 12pm (160ccs) and so far, no diarrhea. If we could manage to discontinue Reglan, that would be great. The strange thing too: when we discontinued Reglan last May, we did have a couple of months where Ella seemed fine without it. But then we were hospitalized for a night due to feeding intolerance and the small bowel series indicated that she was not having gastric emptying, we started using Reglan again. Maybe that is when the bowel obstruction was starting and so she needed Reglan to help push things through? And maybe that is why she has required Miralax the past couple of months since we were hospitalized in Denver for a partial bowel obstruction? It was just the medicine she needed to move her system along. But now that she has had surgery, it would be great if we didn’t need to use either one of these medicines.

Ella’s lab numbers have all stabilized out, and she hasn’t really been that agitated either. The only side effects we are still experiencing relates to the Ativan which is keeping her in a perpetual drunken state. It can be funny to see sometimes but very nerve racking when she’s zooming around the crib and looks to do a face plant into the metal rails…oye. For this reason, we have to be vigilant in being right next to her when she’s active.

At this point, we don’t even have to work up to full feeds (1,375ccs per day). Even if we can get enough food and water into Ella to keep her minimally hydrated and nourished (1,000ccs), and her body can process it properly, we can look to head out of the hospital and work up on the remainder of the feeds on our own. Please pray she tolerates our feeding plan for the next couple days with no diarrhea!

Thank you again and again for all of you who have come by to visit, bring meals and/or have sent your support with cards and gift baskets. It has been one of the greatest gifts to us this time: feeling like there has been so much support in-person during our stay along with our virtual support on the blog.

When coming through all that we have, I find myself being reminded about the privilege that started over three years ago…

Being told by doctors in your home state of Colorado that your kiddo has a 20% chance of survival, BUT finding a surgeon in Florida who has a passion for saving these kids: a privilege.

Temporarily uprooting your life, moving to Florida, expecting to stay three months, staying eleven, multiple surgeries later, many heart wrenching days, lots of love shown by nurses, connecting with other amazing CDH families and friends, our precious daughter saved: a privilege.

Moving back to Colorado, watching your child grow, get strong, go through therapy, finding an amazing pulmonologist and pediatrician, going back into the hospital for reherniation surgery, connecting with more nurses and families: a privilege.

Still more therapy, multiple setbacks relating to food, drama with a nanny, the loss of a son, the doctor and many people who helped us get through it: a privilege.

Ella in the heart cath lab, SVC opened up, connecting with more doctors and nurses, Ella getting stronger, sitting, standing, babbling, crawling for the first time, back to the hospital in Denver for a partial bowel obstruction: a privilege.

Being able to travel with Ella in an RV all the way to California, seeing friends and family on the way, being close to CHOC when your kiddo has a major bowel obstruction, emergency surgery, four days of intubation, massive withdrawl symptoms, staying in the PICU for over three weeks, connecting with a single mom taking care of her precious son in the PICU, untangling all of Ella’s wires over and over again because she’s feeling better and acting more like herself, having a CHOC nurse be bold in asking to pray with us this morning: a privilege.

When we were in Florida, and Dr. Kays was talking about the plan for Ella and the potential future events, he raised the possibility of a reherniation. What was profound is what he called it if he would ever have to operate again: a privilege.

You see, having a kiddo that has been through all Ella has, all the complications, all the challenges, all the exhaustion, all the anxiety, all the tender sweet moments, experiencing Ella’s strength, her personality, her cuteness…all of this: a privilege.

Being able to share her story and have so many lives impacted for the Kingdom: a privilege.

Heavenly Father: Thank you for the privilege of being Ella’s parents. While it has to be the most challeinging and difficult thing we’ve ever experienced in our lives, the reward and privilege of having her with us is greater than words can truly express. Praise you Jesus for bringing her through the last few weeks, and all the many weeks before. Thank you Lord for letting us have her in this lifetime. Thank you for her amazing life. Thank you for her testimony of your Grace, Love, Mercy and Strength! May she continue to be a blessing to you as she has been to so many others. Amen

to give a full update. Ella is stable…we’re exhausted…we will fill in the blanks later.

Thanks for understanding, and especially for the love and support.

G’Night.

Well, Tina was right in her prediction on the previous post. Ella decided to wake up around 4am this morning with spells of agitation and fussiness. Benadryl and morphine were given, but she didn’t settle back in until 5:30am.

Around 6am they came by for an x-ray. A chest x-ray was ordered and we thought the surgery team wanted an abdominal xray too. They did, but the order wasn’t in the system when the tech came around. Bummer because it would have been nice to knock them both out at once.

Ella continued to be fussy throughout the morning. When Ella is in this state in can be incredibly exhausting to deal with. On top of seeing your kid not feel well, it can be extra challenging because Ella can’t tell us exactly what she wants. Most of the time, we guess correctly based on her body language, but there are times when you try everything and nothing seems to console her.

Tina has been by Ella’s side almost the entire time we’ve been here. As her mother, I know she wants to make sure Ella’s taken care of, and she’s very protective of our sweet child. It’s hard to convince Tina to break away, and she’s really only been away from the hospital couple times. I try my best to push her out of this place, but Ella’s current instability keeps her here. Today Tina took a real break though. She had lunch with a dear friend that we’ve known for many years. I’m so glad she was able to escape. She was gone for a good 4 hours. I’m hoping I can talk her into getting away more often on a regular basis.

While Tina was gone, Ella maintained her agitated fussy mood, that is, until the docs did rounds. All of a sudden it was like a switch: Ella was happy and a LOT more like herself. Sitting up, smiling, engaging us, reacting to us…just totally typical Ella behaviors. She is still on a heavy dose of meds, which makes it look like she’s had a few beers, but other than that, she’s just being more like herself. She had a honeymoon period like this briefly a few days ago, but not really since. But this time, she maintained her mood for a couple hours, right up until Tina came back from lunch. For whatever reason, Ella became agitated again, and had a major episode (desaturating and passing out). This fussiness continued all the way up until dinner, and then…she was happy again and continues to be so even as I write this. We’re really not sure why she is having these kind of swings, but at least we’re seeing some of our true kiddo break through. I hope and pray this trend continues because we’ve really missed our sweet child.

When the docs did rounds this morning a couple changes were made. They wanted to discontinue all of her PO meds, even her sildenafil because they were convinced they were not being absorbed enough to make a difference. I convinced the attending to at least keep the slidenafil even if it’s only being absorbed a little. It’s such a key component to helping Ella’s pulmonary hypertension that even if she’s only getting some on top of the NO (nitric oxide), I think it’s better than not giving it. He agreed but also confirmed he was doing it so we couldn’t point to him DCing it as a potential sticking point later. I smiled and said, “I definitely understand that”. =)

The other reason for them wanting to discontinue the PO meds was due to what they saw on the abdominal x-ray. It looked as though Ella had another significant distended loop in her intestine. Oye…this was a bummer to see. The attending confirmed that it might not be anything too concerning, but they want to keep giving her bowels a rest and see if it resolves. We did have a doc from the surgical team come around later, and he confirmed that it shouldn’t be anything to worry about. In fact, he thought it was just her colon and not small intestine. (Whew) We’ll confirm for sure with Ella’s primary surgeon, but if all looks good with this and the rest of her gut, we’ll probably try food again tomorrow.

The docs also saw that her chest x-ray today was more “wet” than the one yesterday. So even though she is getting a strong dose of Lasix every 6 hours, that’s still not enough to diurese her. They hit her with another dose of Bumex this morning and she peed out a 418cc diaper (normally Lasix produces 100-178 per diaper)! This has to be surprising to them considering they were hesitant to give Lasix every 6 hours instead of every 8 hours. We tried to tell them, but I think our pulmonologist in Denver affirmed this too. Either way, Ella just confirmed what we’ve said from the beginning. When Ella means dry, she REALLY means dry. Maybe we should get her a tee-shirt to wear with this on it:

The other suggestions that were made on rounds were to get a Nurse Practitioner from pain management involved as well as an individual that specializes in Chinese Medicine. For pain management, we want other thoughts on which meds to be giving to help with withdrawal. It seems like we are having to give so many drugs to keep her comfortable. Plus, she is still itchy. So, we’re hoping to get some insight from her. Also, the thought was to look into using acupuncture to help Ella. We’re excited to explore this area of medicine as we’ve never been presented the option before. Very cool that CHOC has it available here.

We’re so pleasantly surprised to Ella even slightly return to herself this evening. It was shocking because it came from out of now where and moments earlier she seemed so agitated. But we know that He can perform miracles and that all of you are diligently praying for her. We’re hoping that this was not a fluke – it would be great to think that Ella is actually turning a corner. The test will be in the hours to come.

Thank you all for your continued thoughts and prayer support. It means so much during this time.

1 Thessalonians 5:16-18 (NLT)
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

We’ll give a quick update, but with all the not so fun times we’re experiencing now, we figured a photo break escape for you Ella fans would be good. But first…

Ella’s hanging in there, but the parents are exhausted. Her withdrawal symptoms have lessened a little bit, but she still very spacey and itchy. She slept through the night and had a good morning. She was awake for about 2 hours last night and then has been for most of today although she is still sedated. We have tried not to give any additional doses of morphine and have been able to avoid it thus far. One surprise today: she actually tried to sit up in the bed even though she didn’t have the balance or strength to sit on her own! That is her fighting spirit trying to work through the withdrawal meds!

Surgery came by to take a look at her: they still wanted to hold off on food. Once we heard the news, the PICU team thought it might be good to try her withdrawal meds via her g-tube versus IV. A small change, but one in the right direction (since we will have to wean the withdrawal meds at home too). However, they gave methadone via g-tube and within 10 minutes, she was writhing in pain. Apparently, her tummy really hurt. We vented her belly as much as possible and after 15 minutes, she was content again. So, they had to order the withdrawal medicines via IV again.

Ella’s hand looked puffy at the IV site and although it was still flushing, it had been active for 10 days. So, we were able to take it off today to give her hand a break. We checked the central line to make sure that we could still draw labs and it appeared that there were clots in the line. They ordered a TPA (tissue plasminogen activator) to clean up the catheter and eliminate clots. Fortunately, it worked and they are now able to draw off of two more lumens. Thank goodness!

We had asked the docs as well if they were sure that she’s experiencing withdrawal symptoms and not something else. With all the symptoms Ella is presenting though, we’re confident that we’re treating withdrawal. They have a Finnigan scale where they score her each day to see where she ranks on the scale. Ella is presenting most of the signs of true narcotic withdrawal. It’s so difficult seeing your kiddo deal with this when just a few weeks ago we were all enjoying our time together.

One more concern: this afternoon, she seems like her respiratory rate is higher, heart rate a bit higher and saturations not as good. Knowing Ella, it might be fluid related. She has been positive for urine output the past few days. Maybe the net effect is accumulating and we’re seeing signs of fluid retention. On a similar note, they increased her dosage of sildenafil because the echo showed that it was not all being absorbed through her g-tube. Maybe her diuretic is doing the same thing? If she continues this way overnight, we’ll likely be requesting a chest xray in the morning, just to eliminate that possibility.

Please continue to pray for the Bun’s healing and forward progress.

Below are some pictures of our trip since we hit California back in March. Enjoy…

Last night was hard. The medicines to help treat the narcotic withdrawal symptoms plus the itchy symptoms were being administered once every 3 hours. It seems like Ella has already built up a tolerance because at 4am, she could not stop itching and wiggling around the bed. Unfortunately, they could not give her anything to help with the relief. She was wiggling and upset till 6am, when they gave her more meds.

This behavior was shared with the doctors. With this in mind they decided to give a half dose of morphine in between the other meds to possibly help with the withdrawal symptoms. The nurse gave the first dose this morning, and unfortunately, it did nothing for her. One of the docs came by and saw Ella having another episode in the afternoon. They decided to up the dose of morphine hoping it would help. We haven’t use it yet, but there’s a good chance we will have to later.

Tina and I are upset that they have to pump Ella so full of these other meds just to help her recover from the withdrawal symptoms. Even once the symptoms calm down, we’ll have to wean her off these other meds. Granted, we won’t need to be in the hospital to do this, but it could still take up to 6 weeks to titrate the methdone and ativan! Uhhhh…such a bummer.

Ella had a echo done yesterday, but we didn’t hear the definitive results until today. It looked the same as when she was on the NO (nitric oxide) showing mild pulmonary hypertension. This means that the current dose of sildenafil isn’t working like it normally does for her. Our guess is that it’s being absorbed in the stomach but not in the small intestine, minimizing the impact. The docs ordered an increased dose for now until her small intestines are back in line. Hopefully this is all it takes to get her pulmonary hypertension back under control.

Tina also reminded the docs during rounds that Ella was on a regular dose of Miralax at home. They admitted forgetting this fact and wrote an order for her to be put back on it. As of this time, there’s no set date on when we get to start feeding her. The surgery team came by and confirmed that we should still hold off on the food for now. The head surgeon listened to her bowels and, just by the sound, was able to tell that she’s still too distended and not ready. He also affirmed that all the other meds we’re giving to minimize Ella’s withdrawal symptoms will slow down her motility as well. So for now the kiddo is on a steady diet of TPN and lipids via her IV.

With all the complications still in the way, it doens’t look like we’ll be moving out of the PICU for a bit. I guess we’ll consider that a silver lining.

Thanks to all of you who have brought us dinner, sent cards, delivered gift baskets, and visited. The greatest blessing of being in California during this time is the fact that family and friends can support us with their physical presence. Your amazing love, support, and prayers keeps us sane. We also appreciate all the virtual love and support from our friends and family across the country. Thanks for being here with us!

Please continue to pray for our sweet girl…that her withdrawal symptoms will subside, her body will heal, and the Lords work will be done through the circumstances he’s having us go through.

Thank you Lord for bringing us here and for carrying us through this incredibly challenging time. We know you’re in control, and we trust in you, but it is hard to see your child go through this. We know you, Father, can relate. Jesus, we ask that you comfort our child and reduce her withdrawal symtoms. Heal her body, and make her whole again. We praise you Lord for the precious child you’ve blessed us with. Thank you for her. We love her so much. Amen

At the moment the kiddo is resting. She’s been doing a lot of this the last day. AS a matter of fact, since last night around 10pm and it is 5:30pm today and she has not stopped sleeping. I think it’s a combo of her body wanting to rest, plus the bevy of meds that are making her sleepy. I’ll tell you though, I’m happy to have her sleeping considering the alternative. Seeing your kiddo go through narcotic withdrawal symptoms is one of the hardest things I’ve ever had to watch.

She shakes and babbles and doesn’t act like herself plus she is so itchy. It’s really heartbreaking and scary at the same time. There’s also no way to know for sure how much longer it will last either. I mean, the symptoms will go away eventually, but it could last even another week! She has some moments of lucidity when the methadone and ativan hit her just right, but it’s not all the time yet. So keep sleeping sweet girl.

On a more positive note, Ella’s bowels are moving along. She had her first poop last night (yay) which is always a big deal after surgery, let alone bowel surgery. They docs are pushing to switch all meds to PO (by mouth/g-tube for Ella), and so far Ella is processing them in her tummy just fine.

We had an unofficial confirmation of this when she had her echo done. The docs had the NO (nitric oxide) stopped and checked her heart to see if the sildenafil was now working instead for her pulmonary hypertension. Peeking over the tech’s shoulder, he confirmed that her echo looked good compared to the previous one. Yay for Ella’s body moving forward! If Ella keeps this track, the next steps will be introducing food back into her system. The rumor is that a very slow drip of food into her g-tube might happen as quickly as tomorrow.

One small bummer is with all the positive steps forward, there’s a good chance they’ll move us out of the PICU. For Ella it’s a good thing, but for her parents it’s going to present some challenges. The regular rooms are shared, which isn’t an issue, unless some kiddo comes in with some major cold putting Ella at risk. They’re not supposed to put kids like this in a room with Ella, but they do. Plus, no couch/bed to sleep on, so we’ll* probably be catching our winks in a chair. Here’s hoping that somehow we can be discharged right from the PICU, but I have a feeling that won’t happen.

Ella’s Grandma West came for a visit yesterday evening. She made Ella this beautiful blanket and matching cover for her frog pillow. Grandma West got to see Ella during one of her more lucid moments, which was enjoyable for both.

Please continue to pray for our sweet girl as she progresses forward. The support that you all have given to us over the last week has meant so much. It really carries us through these times.

P.S. Lola the pooch is still sick. Hoping her antibiotics kick in soon.

*By “we’ll” I mean my saint of a wife who has been staying next to Ella every night so far. Sleeping on a chair stinks so I may be pushing her to sleep in the rig a couple nights so she can catch up.

The swings of emotions have been crazy and they’ve been in lock step with Ella’s condition.

They were able to get a blood draw this morning through the IV which was a total blessing. They did a full panel and all looked good including white blood count.

Tina and I talked it over this morning though, and felt that Ella’s situation is a lot worse than her last bowel obstruction. With this, we resolved that surgery is going to probably happen. There was discussion of a possible transfer if we wanted to Denver’s Children’s Hospital but we didn’t know if that was the best plan either.

But…

They took another abdominal x-ray…and the intestines looked a bit better. Hmmmm….ok. The PICU attendings said we’ll just do more waiting and seeing. This was a relief.

Until…

The staff confirmed later in the afternoon that the surgeons hadn’t seen the x-ray yet, so the “wait-and-see” approach didn’t have 100% buy in. Well, when the surgeons did look, they weren’t convinced that the intestines were getting better. In fact, they have been more concerned over the bile output coming from her stomach. They indicated that unless this reduces significantly, that surgery is likely going to happen.

So…

Ella is stable, and feeling better because she’s on morphine, but the bile output continues to be significant and her belly is pretty distended. Unless we have a major change in this overnight, it looks like surgery is going to happen.

The doctors here have consulted with our team in Denver which has given them more insight into Ella’s unique situation. This has given us comfort that they have a taste of how complicated she really is.

We would love for Ella to take a turn away from the path of surgery, but we are telling ourselves that it looks unlikely at this point.

Please continue to pray for our precious girl. You love and support means so much to us.

By the way: Sorry for not many pictures and for my blithering posts. I’m running on about 4.5 hours of sleep for the last 48 hours. Tina’s running on 2. Praying we sleep better tonight.

Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”