This last month has been busy! Plus, we will be going on vacation the first two weeks of July, so we figured we’d give an update now. Between vacation, Ella’s 5th birthday and all the crazy life stuff going on, it might be August before we can update again!

We’ve made some progress in getting Ella’s communication device funded. It is still in process, but we’ve received some confirmation that it is going through the necessary steps.

Ella’s physical therapist wasn’t convinced that she could help Ella any further, so she dropped her a s patient. This was a bummer, as we had worked with her for 3.5 years. Since Ella’s gross motor skills are still not up to par with other 5 year olds, we are in the process of finding a new physical therapist.

For some reason, Josh has gotten sick a couple of times since we posted last. And same with me…normally, we are both pretty healthy. This has made for challenging times and switching on/off to take care of Ella and try our best to not get her sick.

Ella’s Grandma Eusey came out to Colorado to visit for 2 weeks at the end of May/early June. That was a fun visit!

In the middle of Grandma’s visit, Ella caught a viral infection (probably one she caught from Josh). At first, we were not sure what was going on. Her stomach was hard as a rock and very distended. Then, she started to get a mild fever. After giving her a break from food and only giving Pedialyte and water for two days, we called the Gi department at Children’s Hospital, to get directive. They were not convinced that it was not something more major, like a bowel obstruction. We weren’t that concerned because the symptoms were not the same as the last time she had a bowel obstruction, so we were quite surprised when the ER doc came in to show us the xray films and mentioned that they needed to admit Ella to the hospital. After 1.5 hours and 4 attempts for an IV, Ella was traumatized. Since Grandma was visiting, Josh took the lead and spent day and night with Ella at the hospital from Friday through Tuesday. It was a long and grueling stay, as we were put under the general service team (instead of the GI service, for example). We felt like we had no advocates and had to fight to get information and advocate really hard to overcome unnecessary tests and procedures that they wanted to push. In any case, a healthy kid w/o Ella’s medical conditions would have been able to stay home and use over-the-counter medicines, but because of Ella’s system, it required hospitalization and complete bowel rest via IV fluids. We were just thankful that it was viral and that she did not need a major surgery!

Ella’s overall health has returned to normal since the hospital stay, but she did lose some weight from that episode and we are still trying to get her GI system back on track. We’ve had lots of fun with blowouts lately – let’s put it that way! She has an appointment in mid-July to meet with her GI doctor again to follow-up with the recent hospitalizations and changes.

We went to her pediatrician as a follow-up to the hospital visit and are planning to return in September to give Ella more vaccinations and a flu shot.

We had a fluke storm here in the Denver area in early June. Hail storm that was huge, tornado sirens, destroyed flowers and plants at our house. It lasted for about 3 hours while we hung out in the basement. It’s been so hot and dry – just this week we’ve had temperatures 100 degrees or higher four days in a row – that is a first for Colorado. And with all the heat and dry weather, Colorado has had so many wild fires in the mountains. While the fires are not really near us, please pray for all the families affected.

Our nanny got married on June 2nd and we missed the wedding since Ella was at the hospital. Such a bummer! Now, she has decided to move with her husband back to Kansas. This means that we will only have her until the end of July. The hunt has started for a new nanny. Such a hard thing to find.

One of our rental properties is up for renewal – we think we’ve found a new tenant (should have it confirmed by the end of the week), but that lease ends at the end of July too, so lots to coordinate that week!

In addition, we are having a family reunion for the Snyder family (my Dad’s side of the family) the first weekend of August, just a couple of days after we get a new nanny and turn the rental property. Crazy busy week!

Ella has figured out that sunglasses are cool – when we go out and she wears them, I think she likes them because she does not take them off. And everyone comments that she looks like a Hollywood rock star!

As recent as today, she left her occupational therapist speechless! With coaxing and assistance, Ella ate 1 1/2 tsp of beef gravy from a spoon, 1/2 tsp of cheese soup diluted with water and salt added, and 1 1/2 tsp cream of chicken soup diluted with water. All with a spoon and touching her chin (while we sang her favorite song to her as positive reinforcement). Wow!!!

Enjoy the summer until we post again!

“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. =)

Since the last time we posted, we have attempted to solve the mystery behind Ella’s coughing and retching. We wanted to reverse any changes recently made, to see if we could get her back to baseline.

We reduced fluid intake, eliminated protein juice that had been added for extra calories and tried increasing her dose of aldactazide (diuretic) back to twice per day (we had reduced it last spring). This allowed us to reduce her oxygen requirement back to 1/2 liter and it seemed that the retching disappeared, but there was still an intermittent cough.

From there, we figured that we would research pulmonology further. Along with the increase in diuretic, we tried an inhaler (albuterol) – that did not make a difference. Then, we tried a burst of steroids for 5 days. Once again, no change in the cough. Next on the list was to investigate options with GI. We increased her zantac dosage to the maximum dose from 2.7 ml to 3.0ml. The silver lining: we were able to make this increase in zantac because she gained weight over the past several weeks to 32 pounds (up from 30 pounds)!

It does seem like the increase in zantac over a two week period (along with the reduced volume, increased diuretic) has made the difference we were looking for – the cough pretty much disappeared. She started to do really well last week and into the weekend – sleeping better and very chatty. Just in a great mood overall.

So this week, we thought we would try adding the juice back into her diet. So far, it has not produced good results. Yesterday, we tried diluting the juice with water and giving it throughout the day (this replaces plain water to provide more calories). Unfortunately because it is a medicated juice with protein, it slows down the already slow process in her guts. So when we feed throughout the day, we can tell that her tummy is taking way longer to drain and process the juice. Then when we go to feed again, the cumulative impact of it not draining throughout the day ends up making her uncomfortable.

Today we thought that maybe we would try giving her the juice without diluting it and then giving plain water the rest of the day to see if that would help the drainage/volume issue. Unfortunately, the fully strengthened juice is not something she tolerated. Within 10 minutes of filling her belly with the protein juice, she was fussy and wanted to lay down. It was chewing up her belly and she was retching a lot. Normally, we would just drain the juice but we alo gave it with a bunch of meds. So we decided to just let her body process it. It created lots of gas and belly pain for her; she was misearable. We ended up having to cancel her speech therapy appointment because she was so upset. Finally, it went through her body fast and she had a bowel movement. Once it passed through, she was normal again. Fortunately, that happened about 20 minutes before her occupational therapy appointment so she was still able to keep that appointment. We fed her normally the rest of the day w/o any more juice and she did great.

We may try once more experiment of diluting the juice down even further – it won’t give her the additional 250 calories per day. But if we could get her to tolerate the juice enough to have 125 calories extra per day, that would likely help with the weight gain. It’s just so tough when she is fluid restricted; your choices are limited. So the good news is that we’ve resolved the cough – now we are basically back to baseline but faced with the challenge of the extra calories and the best way to do that within the contraints that we have with her cute little body!

One other health update: when we went to see the pulmonologist, we had a typical echocardiogram to check for pulmonary hypertension. One strange anomaly they found: a small amount of fluid accumulation around the lining of her heart. Normally, this is only seen with infections and Ella would be demonstrating all types of other obvious side effects that accompany an infection. Since she isn’t showing those signs, the pulmonologist was perplexed but not especially concerned.

When I followed up, I asked if they could get a second opinion from her cardiologist. The team actually went and acquired three other opinions internally at the hospital – none of them were concerned with the findings, since they were so minor and there are no other clinical symptoms. But as a parent, we have never seen this on any of Ella’s echocardiograms. So to be conservative, I requested that we check it again in 2-3 months (versus waiting 6 months which is the normal timeframe). This means that we will need to take Ella in for an ECHO in November or December to see if it is still present, has gotten worse or been minimized.

Ella is still doing well with her occupational therapy and is having a great time – she loves creamy garlic alfredo sauce! This is a girl after my own heart.

As a follow-up to the last post, Ella and Grandma Eusey have been having a great time hanging out each day together and bonding. It’s fun to see their progression with each other.

Grandma Eusey found a place to live nearby and hopes to make the move from California once the baby boy is born (Josh will have three weeks of paid paternity leave, so she will move while Josh is at home helping).

I don’t have too many photos of the great event, but Josh also turned 40 years old. One of his other college friends was turning 40 too, so we combined the surprise events for the day. It was complete with pizza, cake, and college guy friends going to a shooting range, dinner and drinks in downtown with a hotel as a crash pad (one friend even flew in from Florida). Overall, it was a memorable day for him. Much better than hanging out with the pregnant wife!

On the baby front, Josh and I also went and had some maternity photos taken by a local photographer.

My dear friend, Terri came all the way in from Dallas to throw me a baby shower – my neighbor was gracious enough to open her home. Many friends and ladies from the neighborhood arrived to give gifts and well wishes for the baby boy.

Finally, we’ve been getting the room as well as all the details prepared for our new arrival. Here is some shots showing the progression and transformation of a very pink girly room to a boy room with a vintage airplane theme. Some of the walls are still blank and have some room. We’re looking forward to Grandma West coming out with her artistic talent to put her stamp on the boy’s room (just like she did for Ella). She is planning to visit after the baby boy arrives.

So for now, the due date for our baby boy is just one week away on October 23rd. No contractions or any signs of labor – he seems content to sit in my tummy and bake longer! Besides being very uncomfortable (feeling large, pelvis pain, sciatic nerve pain, and all the other fun pregnancy symptoms), everything is progressing and measuring normally. At this point, my doctor said that we would discuss a new strategy if the baby is one week late – October 30th.

We’re just waiting in anticipation for our new arrival. Pray that all goes well in the coming days and that Ella’s little brother will make his arrival soon!

I know many of you used to wonder how in the world that I had time to blog about Ella, much less every day for two years. But I think that having a full time job that is crazy plus a newborn pretty much halted the blogging altogether for a stretch. But I’m sad because so many great things have happened with Ella and you’ve missed them because I did not take the time to write.

One of the best things is the addition of her baby brother. I cannot tell you what a shock and surprise it is to see her with him. At first, she wasn’t too sure because she had never been around a newborn. You could tell that there was this look with wonder as if she were saying, “Mom, what is that thing?” She doesn’t spend much time in public, so I honestly think she was unsure what this thing was that was so small and made so much noise. But as time progressed and her brother was in the house 24/7 with her, and we kept telling her that this was her brother with big smiles, she started to like the idea. It only took about 2-3 weeks for this realization to set in.

Now many of you have never met Ella in person and those that have met her, may not have had the privilege of getting a hug. Ella is strong and when she likes you and wants to hug you, be prepared. She doesn’t just put her arms around your neck and push her cheek into yours, she pushes her entire body into you, as if she is trying to crawl inside you!

You can imagine then, just how endearing, when we saw Ella trying to give her brother a hug. She likes him so much that we have to make sure she doesn’t hurt him. And Isaiah loves it – he thinks his sister is awesome. He’s always tracking her and smiling. Now we know that eventually these two will fight just like healthy siblings do, but we thought Ella would be more jealous and not like her brother. It’s very surprising to see her response and such a blessing.

Some other highlights for Ella:

-She’s been staying healthy! No overnight hospital stays!

-Grandma Eusey has played a huge part in helping Ella move forward. Since they hang out together during the day, Grandma Eusey is always teaching Ella and asking her to help her with things: putting things away, sticking clothes in the washer, opening and closing doors, brushing her hair, etc. By playing and making things fun along with her developmental stage, Ella is interested in exploring lots of things.

-Developmentally, Ella seems like she is around two years old. She’s starting to do things that other two year olds do, including the temper tantrums! Terrible twos have arrived.

-Ella’s receptive language has increased. We feel like she is understanding more and more of our verbal communication to her. When we repeat things to her verbally, day after day, it seems like she is picking it up faster than before.

-Ella has started to mimic. This is HUGE! From here, the possibilities are endless when it comes to communication – and we are so excited because we’ve tried everything for years and this is the first time we feel that we have had a break-thru.

Initially, about a year ago, she figured out that if she wanted more of something or liked something, she would clap her hands. And/or she would grab your hand and take it to show what she wanted. But now that she likes to mimic, it has opened up a new world.

It began about 8 months ago when she wanted us to play “Peek A Boo” with her. So she started taking her hand and covering her eyes and then moving her hand away from her eyes, as a sign that she wanted you to play this with her.

I am happy to report that this has now expanded. Her therapists like to use singing and nursery rhymes with Ella as a motivator. So the next favorite became Itsy-Bitsy spider. So we took the time to “sign” the Itsy-Bitsy Spider song. We found a free app on the iPad that would sing the song too – she would play it over and over and over again. Next thing you know, she was taking her hands to sign that she wanted us to sing the Itsy-Bitsy Spider song to her. That was awesome!

Grandma Eusey decided to incorporate the Baby Signing Time videos more into their day (Ella has been watching those since she was an infant). So one of the next signs was “hat”. Grandma would bring a hat or two with her and they would play. Ella can sign “hat” now. What else you ask? Eat and Wash Hands are there too. If you ask her, “Ella, do you want to eat?” She will make the sign for eat!!!

Now, we are working on “Mom” and “Dad”. It still takes lots and lots of repetition for her to get it, but we are so excited that we think she is beginning to understand the concept. This gives us so much hope that our daughter might some day be able to communicate her wants and needs more effectively.

-Yes, after 2+ years of daily use, Ella slammed her iPad on the floor and broke it. Sigh…Josh decided that he doesn’t use his that much and handed it over for Ella to use instead. Needless to say, we also upgraded the cover to the highest rated child proof one on the market!

-Ella’s favorite book is still Brown Bear by Eric Carlyle.
-With Grandma’s help, Ella is also learning how to draw with her erasable Crayola markers. She is making quite the art work. I think Ella’s birthday might need to include an easel.

-We purchased a tricycle for Ella over Christmas – she became obsessed with it. Her oxygen cord gets tangles all the time, so we have to out it away sometimes. She doesn’t know how to ride it solo, instead she like to push it around (and into the walls)! But the interest is there and she is working on it with her physical therapist.

-The physical therapist showed Ella and Grandma how to practice her getting in and out of her high chair. Grandma reinforced over and over – she got it down in about a week. Now you just tell Ella to go sit in her chair, and she does it solo!

-Grandma and Ella love to do her hair and put zillions of matching bows in her hairdo each day. But now it has become a “thing” to sit in front of the mirror and have her hair styled….and yes, she is still obsessed with shoes and loves to sit down and try each pair daily!

-Grandma and Ella like to do girly things. So one day, I noticed Dora underpanties over Ella’s diaper. She gets excited and thinks it’s very fun!

-Ella still loves her daily conversations with George.

-Ella’s biggest health challenge: gaining weight. Last time she weighed on March 15th, she was only 31 pounds but has definitely lengthened. Even her 3T pants on the tightest setting for the waist, were falling off of her (and they are too short). So our main mission is to increase her calories. Back in December when I was feeding Isaiah, I noticed that I was feeding Ella more often than Isaiah. Somehow, this didn’t seem right. So we worked to reduce her feeding sessions from 8 down to 7 times per day (during the waking hours, nothing overnight). But now each week, we try to increase her food just slightly. We are trying not to add feeding sessions. So far, we’ve had success. Over the past few months, we’ve been able to increase her blended food intake from 840ml to 1000ml, just this week. We just have to make the changes slowly and try to delicately push her body. We can tell that the slight increases are having an impact, but her pediatrician wants to see her gain 4-5 pounds and told us that besides keeping her healthy, that is or homework!

-We’ve regressed a bit as far as feeding orally. Her OT therapist is pregnant with a baby girl and had to go on modified bedrest so she cannot work! We won’t see her until September! And Ella will not let us feed her. Oh believe me, we still try. We’re hoping that watching her brother start to eat food will create new interest.

-Another piece of good news on the health front: we decided it was worth taking the risk to see if discontinuing aspirin and Plavix will work. These are blood thinners and Ella takes them to keep her three heart stints from occluding. Supposedly, the risk of occlusion is minimal now that they’ve been inside her body for a few years. So, we took an entire set of labs for the hematology to look at while she was taking both meds. Then, we discontinued taking them in early March and have been off of them. Now, we just went back for more labs yesterday to check the clotting properties of her blood. We’re hopeful that we can remain off of them and have no ill effects. (If you remember, she had her first stent placed and took aspirin daily but the stents occluded and she was back in the cath lab 6 months later, requiring 2 more stents). And unfortunately, by the time you realize that there is something wrong (too much pressure gradient on an echo), its too late. We are hoping that the blood work can give an indication and we can be proactive, if needed.

-It’s time for Ella’s recertification for her IEP. If you remember, we opted to keep hold her back in preschool again last year so she could continue to work with the same teacher – they love each other and work together so well. This year, she has to move into Kindergarden and her re-certification is up. When I asked her pediatrician about keeping Ella in a home setting versus attending school, he was bold in advising that we keep Ella home for another 2-3 years and away from all the germs from other kids in the school setting. She is staying healthy at home and what might seem like a small illness (like last year when she caught a virus from Josh), puts Ella in the hospital for days. He just feels that she needs to get stronger before we expose her to children daily. So I reached out to Ella’s advocate that we hired last time, so that she can attend the IEP and help us fight for Ella’s educational needs. Her IEP meeting is in mid-May.

-“Aunt Karen” comes to hang out nearly every weekend. The kids love on her and vice versa. It really does seem that she is part of the family. She is a God-send, giving us breaks from the kids and allowing us date nights.

-There was a CDH reunion in Gainesville, Florida yesterday that we were not able to attend. It would have been so fun to go and see some of the other families and see Dr. Kays. Sigh…maybe next time.

Josh got a new job recently – it’s been very busy but he’s loving his new gig. Also, we recently celebrated 18 years of marriage!

Finally, we’re trying to set up another family blog, to help this blog continue to feature Ella and her survivor milestones. Look for an update on our family blog coming soon, so you can catch up on TONS of photos and see how adorable Ella’s little brother has become!

When did this happen? When did our little miracle grow up so fast? I’ve been pretty emotional about it all day to be honest. Every time I think about our wonderfully sweet amazing girl turning 6, I just tear up. It doesn’t even seem real.

As I write this, Ella’s brother has gone down for the night, Tina is in the kitchen baking some treats for an event tomorrow, and I can hear Ella “talking” in the background. It’s amazing how far she has come.

I think to best protect my emotions, I set my expectations low in regards to Ella’s progress. And yet, she continues to surprise us. Recently she’s begun to hum along with the songs that play on her iPad. She is even doing the BEEP BEEP BEEP along with the Wheels on the Bus song! This is the cutest thing ever to experience and Tina and I get such a kick out of it while driving with her in the car. She’s just in her seat and will start humming along with the different songs she hears. So wonderful.

While she doesn’t have any speech for communication, she does have her own “language”. I have this vision that if we were all to travel to Paris, some local would let us know that she speaks perfect French. Oui…at least that’s how it sounds…hehe. There is no rhyme or reason to her “words”, but it is so cute to hear her “talk” to her stuffed animal giraffe, George.

The birthday today has been low key. Ella has no concept that it’s her special day, but we’re still all too happy to hug on her, sing to her, and affirm to her what an amazing girl she is. I just can’t get over the fact that she’s SIX YEARS OLD TODAY!!!!

So I sit here and marvel at this precious girl’s progress, praising God for all he has brought us through to this day.

Thank you Lord, for the gift that you’ve blessed us with. This life that is so precious and innocent and is such a loving little girl. What a miracle she is and what an impact she’s had on so many people. We praise you for her life and know that she is exactly who you planned her to be. Let her continue to grow strong and may your love shine through her for eternity. AMEN

Well it’s been a whole year since our last post. Miss Ella turns 7 today. Below is a video of the fam waking her up this morning. I plan to post more later but wanted to share this for now.

Happy Birthday to our sweet Ella Renae!

Hello Ella-fans,

It’s been awhile since we posted but no news is generally good news. 🙂 On that note, after 2 years of not being in the hospital and 4+ years since surgery, Miss Ella was checked in last night (6/29). Here’s a video with the first days details as I was too wiped to type.

And here are some pics and a video from the day.

Appreciate the thoughts and prayers. We’ll keep you posted with any other updates.

Ella did alright overnight but Tina didn’t get that much sleep as she was with her at the hospital. I stayed at home with Isaiah but also tossed and turned.

I came to the hospital in the morning to relieve Tina so she could get some rest. I started this post while sitting in radiology with Ella.

Ella spent most of the day (9am to 3pm) in radiology waiting for the barium to pass through her system. Ella also behaved incredibly well considering the circumstances.

We passed the time with a little Taylor Swift…”Shake it Off” is her fav:

And also acted silly and blew kisses:

So far they have not seen anything concerning. However, things are still moving too slow in her system and we won’t know for sure until after the last x-ray tonight. Our hope right now is with bowel rest, her intestinal issues will resolve without additional intervention.

We left radiology around 3pm but they let us know we would need to take another x-ray at 6. After the 6pm x-ray they determined they still need one more and that’s scheduled for 8pm.

The overall good news of the day is that there is nothing glaring with her GI structure to indicate any major issues. My perspective is, worst case, there are some adhesions and scarring that are causing a level of blockage which is impacting her intestines. Best case, and I’m leaning (and hoping) that Ella did pick up some bug a couple weeks ago and her guts are just ticked off. If we can get them to calm down, the hope is they’ll go back to her “normal”.

We will start introducing pedialyte this evening to see how Ella tolerates it. This will be a slow process. Don’t know for sure how long we’ll be here at this point, but it ’tis what it ’tis.

Aunt Karen has spent the afternoon with us which has been so nice. Ella loves her Aunt Karen. 🙂

At this moment, Tina is on her way back with Isaiah so we can switch shifts. Hoping for a restful night for all parties.

Thanks again to all for the continued thoughts and prayers via text, emails, and comments.