…so I can…so I can…watch you live and breathe your story lines.

Yeah, the Corey Hart song was definitely in my head today. I took Ella for another walk in the Baby Bjorn, sporting her sunglasses. By the time we came back into the apartment, she had fallen asleep. So I just laid her in the crib, sunglasses and all! The sunglasses fasten with velcro around the back side of her head and trying to remove them would have caused too much commotion. She looked way too cute sleeping with sunglasses.

Ella had a great night of sleep last night. She only woke up about 5 times total. I would give her what she wanted and she would just roll over and go back to sleep. That was a blessing for me. Hey, at this point, even 7 hours of slightly interrupted sleep is amazing!

We are having a nice break from the flurry of doctor appointments this week. We have simply been at home trying to help Ella gain weight while doing our feeding and physical exercises. It has been great to not have to go anywhere. Tomorrow we have a occupational therapy appointment, but the OT comes to the house, so that won’t require a “trip” with Ella.

Next week will be busy with 2 physical therapy appointments, an OT appointment as well as the pediatrician appointment for her check-up and synagis shot. So it will feel busy again!

Today, Ella finally tolerated her swing. We purchased it weeks ago but she would get fussy after a few minutes. I think the sitting position would get uncomfortable. I think our chair exercises are helping. I didn’t take a picture, but she actually fell asleep while it was swinging with music.

Ella is starting to get granulation tissue around her g-tube again. It seems like we have been able to keep it away for about 3 weeks. It isn’t bad right now, but it will be ready to be burned off by the time we see Dr. Kays on April 22nd.

Ella had a visitor today. Sara came over to see her again. Unfortunately, the stranger anxiety kicked-in early on the visit. So Sara stayed afar and watched Ella, making sure to give her space. During the visit, it was time to eat! It was actually Ella’s best feed for the day; she took 40ccs total. That is great too considering that Sara was standing there talking to me and watching Ella. If you remember, last week the OT was watching Ella and she decided to have a meltdown! Hopefully tomorrow will be a better session.

Well, we officially got an appointment with Dr. Steve Abman in Denver at the Children’s Hospital. I’m very excited that came through for us. Now, we still need a really good pediatrician. Ideally, it would be someone close to our home. However considering Ella’s health situation, I’m willing to drive.

I placed a request online to the ParentSmart Line at the Children’s Hospital to see if they can advise on a primary care doctor. Maybe there is a doctor affiliated with the hospital that would be perfect. The main need is a doctor that can help with all of Ella’s various health issues, give a referral if they do not have expertise in a specific area, as well as help to coordinate appointments with other specialties.

I am getting ready to start the process for the occupational and physical therapy search. Our ideal situation would be to have care provided in the home. Each state has an Early Intervention Program that is federally funded. I need to schedule a time where they can evaluate Ella, so they can assign a service coordinator that will come out to our house and go over the whole program.

Our hotels, rental car, flights, and all those types of details are already booked for the trip home. Grandma Eusey even has her plane ticket to Denver, so she can be ready to help upon our arrival!

In looking at the calendar today, the time to leave is going to arrive sooner than we know it. The countdown is only 44 days until Josh makes the first trip to Denver and 47 days until Ella leaves Florida for the first time!

Here and there, it hits me. I’ll read one of your comments, or tell Ella’s story to a stranger and I’m humbled by how God has used this painful time to bring glory and honor to Himself. I can’t believe that God chose us to be the parents of Ella and that we came all the way to Florida to deliver our baby girl. In addition, that all of you have decided to follow our journey and provide friendship and support, beyond anything we would have ever imagined.

We’re so thankful.

1 Samuel 2:1-2

“There is no one holy like the LORD;
there is no one besides you;
there is no Rock like our God.”

Ella was half and half today. No, I don’t mean cream and milk. She felt happy half of the time and the rest of the time, she was real fussy. Extreme opposites throughout the day. Josh noticed that she was pulling on her right ear. She has done that in the past and it hasn’t turned out to be anything. Hopefully, it is nothing serious this time either.

Thankfully, Ella took one full bottle today. Even one bottle per day, of only 75ccs, feels like a huge victory. Compared to other children, that is hardly any formula taken orally. But for Ella, one bottle per day is great. Again, we are hoping for 5 bottles per day eventually.

The key word is eventually. It really hit me today how long Ella is going to have a g-tube. Did I mention that I really do not like g-tubes?

While the weather was nice, I tried to get Ella outside today. I opted to try the Baby Bjorn and pushed the stroller as a back up. I think she finally has enough neck strength to face outward, so we tried that position. It was very bright outside, so I put on her sunglasses. Once I placed them on, she never tried to take them off. I think that means that she liked them.

We ran an errand this evening and thought we would test Ella in the back seat by herself. For the first 5 minutes, she was fine. I looked over the seat to check her out and she was just looking around.

About 10 minutes into the drive, we were at a stop light so I did the same thing. Except this time, she had her hand pulling on her cannulas. They were completely out of her nose. On top of that, she had pulled the tender grip sticker off her face on the left hand side.

For those of you that aren’t as familiar, this means that there was no easy way for me to replace the cannulas in her nose. I took off my seatbelt, leaned over the seat and tried my best to hold the cannulas in place. As I was leaned over into the back seat, we prayed for no accidents. As soon as possible, we pulled into the nearest parking lot.

Fortunately, the diaper bag is stashed with all kinds of Ella necessities. It requires skin adhesive remover, skin prep, and tender grips. We happened to be in front of Wal-Mart, so I opted to go inside for a few things. Once I was in the store for 2 minutes, my phone rang. I could hear Ella melting down and Josh asked me to come back to the car right away. When I arrived, Ella was just a mess. Josh was trying to replace the tender grips, but Ella was tired and not behaving for him.

In a calm way, I explained that we could pull into a discreet and well-lit part of the parking lot and change out the tender grips as a team. I held Ella and made sure the cannulas stayed in her nose and Josh went to work in three stages to change out the tender grips. A few times, Ella continued her melt down. Like any baby, she was simply telling us that she did not like what was going on, she was tired, and wanted us to stop messing with her. However, she needs oxygen and there was no way the cannulas would stay in properly without this process being completed.

Once she was calm, Josh held her while I ran into Wal-Mart. I came back out and Ella had not moved from her sleeping position. Now, I had to put her back into her seat and belt her. Sure enough, she got really mad at us again. It was like she was saying, “Would you stop messing with me and just let me sleep?”

It did not take convincing this evening to have her go to sleep. I thought she might like being rocked to sleep. She wasn’t interested in that business. She fussed continually which meant that she just wanted to be left alone to go to sleep. I placed her in the crib and she was asleep within seconds, it seemed.

Reflecting back on the car ride, I am not sure how I would have managed solo. This is one of my biggest concerns when we return to Denver. Josh needs to be in the office for work each day and when I have doctor appointments, I need to be able to drive Ella to them by myself.

Tonight was a clear example of a situation that would have been tough to negotiate on my own. I’m not sure when I would have noticed that she pulled her cannulas out in the first place (we have a mirror in the back, but it is still really hard to see her, much less the transparent cannulas). Secondly, I could have stopped the car to get her to calm down and hold cannulas in place, but changing them out and doing everything on my own seems impossible without an extra set of hands. I try not to think about these situations too much, but I am terrified.

All that comes to mind in this verse:

Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Thanking Him for another day with the Bun. Honestly, she has seemed a bit “off” the past few days. We are praying that it is nothing to be concerned over and that she is getting stronger each day.

Ella was fussy again today; she doesn’t seem to be feeling that great.

This was her behavior yesterday too. Although today, I gave her Tylenol twice since she felt like she had a fever. Then, instead of avoiding naps, she finally took a 5 hour nap in the late afternoon. The good news is that it didn’t stop her from going to bed at her normal time tonight.

I hope that this is not an indication of anything else more serious. It is so hard to not assume that possibility, but I think we have been conditioned to be extra sensitive to something being wrong.

We can tell she is gaining weight and does look more puffy in her face. We are just hoping that it is baby fat and due to true weight gain. Just to be sure, we are watching her numbers at night while she is sleeping to make sure that her saturations and heart rate are in the normal range for her.

Feeding was not great for Ella today. I was able to get her to take about 45ccs at one session. The others were not successful – she would cry and not want the bottle. She has been more congested the past couple of days. And when I gave her the bottle yesterday and today she seemed to be gasping for air more often. Imagine having a stuffy nose and not being able to breathe out of your mouth. Then, try to suck on a bottle. Every second or so after she would have great technique, she would break away and take a breath. Unfortunately, this builds up and causes her to have gas/air in her belly. Hopefully, her eating will get on track tomorrow and she will feel better.

An amazing thing happened this evening: the phone rang and it was the Children’s Hospital in Denver. They were returning my call.

We tried to get assigned to a particular doctor last winter and it didn’t happen. After going back and forth on the phone, I knew I needed to research more and that for many reasons along with this one, we should consider staying in Gainesville longer.

When I called last week to start the process again, I took a different route. However, I was still told upfront that he does not take new patients and that it would likely not be possible. Yet, I was convinced that we needed him to take care of Ella. All my research indicates that he is the one of the best in Denver for pediatric lung issues. With this in mind, I was determined to fight and get an appointment with him.

Fortunately, a lady named Lucy who works in the pulmonary hypertension program called me and was really nice. We talked briefly and she praised us for our decision to go to Florida and have Dr. Kays treat Ella. Without going into a bunch of details on her end, she stated that Dr. Steve Abman would be happy to take on Ella as a patient. My heart was immediately uplifted. This is confirmation that getting in the car to go to Denver at the end of May is the right decision. Ella’s medical care is a huge concern and seeing the piece of the puzzle fit together in this way was reassuring.

Also, it is great that Denver has such a strong program for pulmonary hypertension. Many of the things that she mentioned were similar bits of information that we have heard before from Dr. Kays. Although repetitive, it is good to hear because it indicates that the philosophical approach to pulmonary hypertension is similar to Dr. Kays.

I want to type more, but I am literally falling asleep! I need to run into the bedroom and sleep while Ella is getting some zzzzzs, so I am ready to face tomorrow.

Ella did not sleep well last night and she barely took naps today. I’m hoping that means lots of shut eye tonight.

The Bun was not as interested in eating today. The most she took was 20ccs in one session. Kind of a bummer…

When Josh fed her early this morning, she seemed fussy and not satisfied with the bottle. He thought that maybe there was something wrong with the food. So, he made the innocent mistake of tasting the formula! Wow…I think he was surprised at how awful formula tastes. Certainly this meant the formula had gone bad, even though it was refrigerated and less than 24 hours had passed.

So, he proceeded to make an entire new batch of formula. Once he shook it up, he took a taste of that batch too. I think he expected that it would taste better, but it tasted the same. It literally made him lose half of his breakfast in the sink! According to Josh, this explains why Ella isn’t taking the bottle – – the formula is nasty! I’m not sure that is quite the deal, but it does explain why it smells so bad too!

Ella and I took a walk this evening as the sun was setting. It was not too hot and there was a slight breeze. Ella tolerated it well and even perked up when I made silly faces at her periodically. At the end of the walk, I just held her for a while so that she could look out at the view. There were some birds flying around and calling out to each other. Since Ella has been watching her Baby Einstein video titled “Neighborhood Animals”, she recognized the birds and smiled. Very cute.

The last day or so, Ella has been testing her vocal cords more. She is starting to laugh. It is hard to hear, but it is gaining strength. Also, when she gets excited she is making these outward bursts of her voice. It surprises her along with us. It is a good sign that she is realizing that she can make noise. Her first step was learning to cry and fuss. She has that one mastered, but cooing and giggling are still in development.

I can’t wait for the day when Ella can talk. Our greatest desire is that she will grow to know and accept the Lord.

We hope and pray that we can be the parents we need to be, so that she can one day praise Him with her lips.

Psalm 71:6
From birth I have relied on you;
you brought me forth from my mother’s womb.
I will ever praise you.

More heat and thunderstorms kept us inside all day again. It has been a restful and lazy weekend. We’re soaking up the last hour or so this evening before the work week begins, so tonight’s post is going to be short and sweet…just like the Bun.

Finally, Ella took a full bottle this morning after lots of patience from Josh. Praise God!

The countdown for heading back home has started. Only 48 days until the move begins! Looking at photos today reminded us of how much we miss Colorado.

Also, it was nearly 60 degrees in the Mile High City today, per Ella’s Grandpa. The dogs were outside soaking up the rays. Have I mentioned how much I miss my dogs? This has been a long journey. Thankfully, Ella’s Grandpa has been babysitting them this entire time and likewise, they have kept him company. Here is a picture of them last summer before we came to Florida.

Not sure why, but this verse stood out to me today as I read this psalm. Maybe it is because we have come so far with the Bun, yet we have such a long way to go. I do know that His timing is perfect. This verse is not a command, but a promise. It is a promise that I can hold onto when my eyes don’t seem to tell me the same story.

Psalm 27:14
Wait for the LORD;
be strong and take heart
and wait for the LORD.

We praise and thank Him for Ella Renae; she is such a blessing.

We decided to stay at the apartment today since it was hot and thunderstorms were raging outside. We had a nice lazy Saturday with the cats. And of course, the Bun is still as cute as ever.

She didn’t respond much to the bottle again, so we are hoping that she gets her skill back soon! We know that she has good days and bad days when it comes to her developmental goals. At least we know that she can finish a bottle, so we may just need to think of some new tricks to distract or get her interested again.

Besides that, it does look like she is gaining weight. We will get to weigh her at the pediatrician’s office on April 15th. That should give us some indication, although it is not a digital scale. We have been using the digital scale at Dr. Kays’ office to gauge her true weight gain.

Ella was happy and smiley again and we did some good physical therapy exercises. I’m hoping that the physical therapist will notice a subtle difference in her when we return to sessions in 9 days from now.

Our plans for making our way back to Denver are coming together. It looks like we will be making our way back over the Memorial Day holiday week.

Aside from challenges with exposing Ella to many people & kids on a commercial flight, there were a lot of concerns with the effect the cabin pressure and varying altitudes might have on her underdeveloped lungs. Also, figuring out portable oxygen via the airlines is a nightmare. So, driving back is a better option.

If we had a larger car, driving back would be easier. Our VW Jetta is very cramped with Ella’s seat and oxygen supplies in the back seat. Plus, adding 2 cats to the mix is not my favorite idea. Then, where do we place the items we have accumulated since we have been here for almost a year???

After researching many options, most were extremely expensive. So, the best and most cost effective plan is the following: First, Josh and a buddy from Orlando will be driving our car back to Denver with the cats over the three day weekend. Then, they will both fly back to Florida. When Josh lands, he is renting a minivan from the airport, driving back to Gainesville, packing up our belongings and driving. We will take our time and drive back to Denver over 5 days. My mom will fly in from San Diego to meet us, so that she can help me acclimate to my home with Ella while Josh returns to his place of employment.

Now that we have the dates chosen, we are in high gear to get all the details arranged. We have about 7 weeks left to figure it all out. Believe it or not, there are a lot of things to coordinate between doctor transfers, prescriptions, home medical equipment along with general moving details. At this point, we should be professionals. Can you believe that this will be the 16th time that Josh and I have moved over the past 13 years? Crazy!

We are looking forward to going back to Colorado. In the meantime, we pray that Ella will continue to remain stable and gain weight.

Thanks for the support and prayers. All of you have given us such a strength during this season of our lives.

Wow…the Bun sure can get excited. There are times when she’s just so smiley and happy, that I think she’s going to turn herself inside out! Check out the video below…and yes…that’s her crazy dad egging her on. (high speed Internet connection required).

Although we missed capturing them on video, the Bun gave a few giggles for Tina and I today while she was sitting up in her PT seat. This is the same giggle she gave me a couple weeks ago. It’s so cute.

It’s neat to see these aspects of progression, because for Ella, they’re huge. Developmentally, she’s really a 3 month old trapped in an 8 month old body. She still has a lot of catching up to do.

I got up with Ella this morning around 6:45, hoping to let Tina sleep for a solid couple hours. My girl and I sat in the rocking chair and just cuddled for about and hour…even dozed off together for about 30 minutes.

Ella wasn’t real interested in the bottle today. She only took 35ccs from me in the morning and didn’t do much better the rest of the day.

We were hoping to show off the Bun’s new feeding feat of finishing the bottle to the occupational therapist, but no such luck there. Her stranger anxiety kicked in and she had a total melt down while the OT was here.

“Aunt” Marla stopped in for a visit today. Even as much as she and Marla connected in the past, Ella’s stranger anxiety still got the best of her. Marla barely got a couple kisses in before the Bun started getting upset. I actually took this harder than Marla. It’s tough because you want Ella to be ok with people, but it’s a very typical behavior milestone for an infant her age.

I’ll take any forward progress the Bun makes as positive, even the stranger anxiety. We know there’s still a long road ahead, but we’re content in trusting that her life, and development steps forward, are all part of His plan.

Thanking God each day for Ella Renae.

Ella’s day was pretty routine.

Unfortunately, she did not sleep great last night. So, we played the dance from 4:30am forward. That did not put me in the greatest mood this morning. Josh was great to “deal” with me.

Man, sleep is a great thing. And not getting it consistently really hurts. I know I need to get used to this idea. But I am already dreaming of the day when I can sleep 7-8 hours solid without interruptions.

She took from the bottle a few times, but didn’t come close to her prior records from earlier this week. That’s okay because we did have some good physical therapy time. One of our tasks is sitting up in her chair. She was able to sit up in it a total of 30 minutes between 2 sessions. That is really good for her!

She was so happy today. It was easy to make her smile. That definitely made the day more fun.

It looks like she is gaining weight, especially in her face. Again, we don’t know for sure but it sure seems like the corn oil might be helping. We won’t know until we take her back to Dr. Kays on April 22nd.

We hope that she is not gaining “bad” weight (weight gain from fluid retention). This type of weight gain is slow and creeps up over weeks of time. So far, we have not seen any negative indicators (saturations and heart rate are still at her baseline).

I had a good initial call with the Children’s Hospital of Denver, as far as researching the best doctors for Ella. I have found a cardiologist and a pulmonary doctor that have experience with CDH, with a specialty in pulmonary hypertension. Since Dr. Kays repaired her missing diaphragm, pulmonary hypertension is her biggest symptom moving forward. Apparently, the Children’s Hospital has a top-rated program for pulmonary hypertension, so that is comforting. The contact I need to work with is on vacation, so I’m hoping to make more progress next week. Ideally I am trying to set up appointments for the week after we arrive in Denver, so the new doctors can assess her right away.

We are still finalizing the details of making our way back to Colorado, but it is looking like the end of May, likely Memorial Day week. We will share the details as soon as we iron everything out.

That timing is a blessing because I took Ella out for a short 15 minute walk this evening around 7:15pm and it was hot and sticky. Already, the hot, hot Florida weather is kicking in. Rain, humidity and mid-eighties and it is only the first week of April. I think it will be good timing to leave by the end of May, not just for the heat but also to avoid the hurricanes.

Please pray that all the details of our move with come together. Also, that the appointments with the doctors we want will come to fruition (the best doctors that I found for Ella typically don’t take new patients).

Lamentations 3:25
The LORD is good to those whose hope is in him,
to the one who seeks him.

Today was positive for Ella.

I was concerned about the PT appointment. Ella was still running a slight temperature throughout the day, so she was being fussy. Also, she was tired from waking up at 4:30am, but would not take a nap. She fought it off for several hours until we were in the car going to physical therapy.

By the time we arrived, she was fast asleep. I was happy that she was getting some needed zzzs, but I wasn’t sure how she was going to respond to me waking her up. Fortunately, it went fine. I spent the time to snuggle her while she looked at the PT and her surroundings.

The PT went very slow this week, like she did the first time with Ella. And thankfully, Ella responded beautifully. Once again, the rule of thumb with Ella is going very slow with new introductions or changes of any kind. She actually was smiling, kicking her feet and having a great time doing her exercises.

After this appointment, the PT admitted that 30 minutes is not ideal. Our next appointment is scheduled for 45 minutes, so that she can spend 15 minutes just warming up to Ella. I think that sounds like a plan!

The physical therapist will be out of town next week, so she gave us homework. We need to perform exercises like sitting up in her chair, tracking objects far to each side with her neck and having her grab toys midline while she is in the chair. She wants me to track the amount of time spent in the chair each day, so we can make note of our progress. We do not have another PT appointment until Monday, April 14th.

Ella did not take a full bottle today, but she had two good sessions: one bottle of 65ccs and one of 45ccs. So, the total was still in line with her progress for the week. Last week at this time, she had never even taken a full bottle. She has made AMAZING progress with feeding this week.

One year ago today, we got the sonogram and found out that we were having a baby girl. My OB/GYN was not in the office and the ultrasound technician did not want to let us know that she knew there was something wrong. So, we went home completely elated that we were having a baby girl and under the impression that she was healthy.

As I reflect back on last year at this time, I am reminded that one day we may think everything is fine, and the next, we may receive news or have circumstances arise in our lives that are not something we had planned. When the news is devastating, it is really hard to hold tight to the truth: no matter how bad the circumstances may seem, it is all part of His plan. God is in control and ordains all of the details in our lives. We may never understand why certain things take place, but just as with everything else: it is all about how you deal with and behave with the cards you are dealt.

I would have never imagined or wished for this journey. Yet here I am a year later with a beautiful daughter that I cannot imagine life without. She has been such a blessing to me, Josh and many of you out there that have been watching her journey.

We praise God for His plan and look forward to our future days with the Bun.

…and think that it might be a good idea to stay in Florida for another 6 months. We’re thinking that it might be…April Fool’s Day!

Yeah, there is NO WAY that we want to stay in Florida any longer than necessary for Ella. Although the details are still coming together, we think it might be as soon as late May/early June. Again, we are still praying and knocking on doors to come up with the best plan. Hopefully, we will have the timing decided in the next day or so.

Ella had a fussy day. She seemed to be running a fever. I ended up giving her Tylenol twice to see if that would make her feel better. Josh mentioned that it appears like her gums are bothering her a lot again. Because of the Tylenol, she became drowsy and took 2 solid naps.

We were only able to get 2 feeding sessions in today via bottle. One time, she took about 35 ccs and the other time, she took the entire 75ccs via bottle! I’m so excited to see that she has taken an entire bottle a few times over this past week. It takes a really long time, but she is definitely getting better at the technique.

We have a physical therapy appointment tomorrow in the late morning. I’m hoping that she responds better this time. I was able to sit her up in the chair again today (the chair that the PT provided). The more time she sits in an upward position, the stronger she will get. Today, she lasted about 15 minutes.

Tonight, Ella fell asleep earlier than her usual bedtime. So, I needed to change her into her pjs and change her diaper before the rest of the night. Since she was so comfy and in such a deep sleep, she let me know that she was not happy. When she cried, it was a loud, piercing cry. I looked at Josh and smiled, “She is getting stronger”.

Okay, this is my baby that could not cry for months. Yes, we are crazy parents that like to hear our daughter cry but it does have such an underlying meaning for us when she lets it all out. The louder it gets, it simply means that Ella is getting stronger and healthier. And that warms our hearts.

Happy 36 Weeks to Ella! We thank Him for blessing us with our baby girl. She simply means everything to us.