Today was a mellow Friday for me and Ella. We did not do much, but hang out in our house.

When Daddy came home from work, he picked up the Bun and started to play. She looks forward to that all day.

We’re glad it is the weekend, so we can all hang out together.

Ella was in a good mood today.

It does seem that her congestion has lessened the past couple of days. She still has it, but not quite as bad. I’m hoping she is simply adjusting to the Mile High City better each day.

We are having to place aloe vera gel on her cheeks and lips each day. We can’t use traditional lotion or anything with oil due to her oxygen therapy. So, we have found that pure aloe vera is working good (100% natural and non-toxic). After only a few days in dry Denver, we noticed that her skin was looking a bit chapped and needed the moisture.

Her oxygen levels have been good. Now she is on 500ccs throughout the day and a bit lower around 350ccs at night. So, I think that Ella is already starting to adjust to the altitude. Keep in mind that this is with the lower saturations that her pulmonologist wants to see.

Yes, I still have to bribe her for tummy time exercises. Fortunately, the Mickey Mouse Clubhouse works well. Macy came downstairs to hang out with us too.

And when Daddy came home from work tonight, Ella was sure glad to see him. They had a good time playing together.

We’re still praying for new tenants for our home. Things slowed down a bit with Father’s Day this past weekend. We’re hoping we can have it rented for July 1st, although based on the response so far, that might be a stretch.

Although it is only my third day alone with Ella, it is quiet. I’m still getting used to Josh being at work. In Florida, he was always in the other room working (telecommuting), but just having someone in the apartment felt different. Also, we would always have lunch together. So, I’m still getting used to being by myself with Ella. I’ll admit, it’s been tough for me.

I just keep reminding myself that this is what He called me to do for this season of life. And I’m trying to enjoy the quiet time before all of Ella’s therapy sessions start up again.

Psalm 119:57-58
You are my portion, O LORD;
I have promised to obey your words.
I have sought your face with all my heart;
be gracious to me according to your promise.

Today was a nice relaxing day.

Josh decided that he wanted to eat at the Original Pancake House for brunch. So we waited until the crowds died down and ate on the open patio area. Unfortunately, Ella was fussy most of the time and required holding and comforting, so eating wasn’t quite as pleasurable for me. But Dad did enjoy his corned beef hash and pancakes. He looked happy to be having brunch at one of his all time favorite restaurants.

Afterwards, we ran some errands and came back home. We just chilled and hung out in our living room with the Bun. After spaghetti with meatballs for dinner, I was craving cookies. When the sun started to set, we walked to Super Target to grab some cookies and milk. All a perfect ending for Dad on his first Father’s Day.

I think Josh was in awe most of the day that he is a daddy. The past year in many ways was like a blur. But looking at Ella and seeing her and us in our home environment, I think he was emotional realizing that his dream to have a baby girl really has come true.

I know that he loves her so much. I just can’t wait for the day when she will tell him beyond her contagious smile that she loves him too.

Yep, we decided to celebrate Father’s Day a bit early with Grandpa today.

It started out with him coming over to our house for breakfast. Josh cooked up a great meal while I took care of the Bun. The poor girl, she was uncomfortable for a lot of the morning. When I went to get her out of bed this morning, I noticed that the food pump did not run all night. This meant that she did not get 225ccs of food, which is almost half of her daily intake. So, I had to feed her more frequently via g-tube in a bolus fashion. It just meant that she felt full a lot of the morning; this made her fussy.

When we finished the meal, we drove over to Grandpa’s house. He needed a lot of help with little things around his house. So we packed up the Bun with her travel crib and DVD player and went to meet the dogs. Needless to say, the dogs were a bit excited to see us. Manny kept jumping on the travel crib because he wanted to play with Ella so badly.

It was great for me to get love from the dogs. I had not seen them since last November, when I came to Denver for a business trip. In any case, they did not forget me! We are so thankful that Grandpa has been taking care of them for the past year or so.

Once Josh was done helping out Grandpa (putting a chair together, fixing a door knob, updating his computers, etc), we came back to our house. I convinced Josh to go on a walk. The Bun had just been given some food, so she fell fast asleep in the reclined stroller. We went on a walk for about an hour, just as the sun was starting to set. It was beautiful.

Today was the first weekend day for the three of us. It was relaxing and felt good to spend time together as a family. We’re looking forward to many more as the summer continues.

Ella had a good day. It was a good day for me and Grandma too.

It was one of the first days that we did not feel like we had to rush anywhere. No appointments during the day made it more relaxing.

Ella went to bed later last night which left time in the morning to have coffee on the patio with Grandma. That is one of those things we enjoy doing together. The weather was pleasant this morning, sunny and glorious with the mountains.

We did have some visitors at the house today too. First, our neighbor from our former neighborhood stopped by. She brought some cute summer clothes for Ella and of course, gave me a huge hug. It is so great to see familiar faces. Ella was asleep when she first arrived which gave some time for catch up.

Then a bit later, another visitor stopped by…she was too sweet. Although we have never met in person, she has been watching the blog and praying for us and Ella. She wanted to bring us some food. We have dinners, lunch, breakfast, etc. It was such a sincere gesture. This gave us an opportunity to meet a new friend…and she has 3 girls and another one on the way! So it is not as if she does not have a million things going on, but took the time to drive out and think of us.

The visitors were a welcomed change of pace and since it is hard to travel with Ella, especially with the oxygen, it is nice to have people come to see her.

In the early evening, I showed our house again to a different prospect while Grandma stayed in the car with Ella. We are still praying for the right tenants to rent our house. Also, I was able to visit with another neighbor from our old neighborhood. Once again, it is good to connect with familiar faces.

After that appointment, I dropped Grandma off at the airport. She was such a tremendous help in getting us settled into our house from Gainesville. Although there are still some things to do, it is much improved from the first time we arrived, less than 2 weeks ago.

Josh is working late tonight and has an early morning tomorrow. It will be the first day for me and the Bun to be by ourselves since we arrived in Colorado. I’m hoping for a fun and stress-free day.

Ella has another pediatrician appointment on Monday, June 23rd. I’m hoping that she has gained weight. Until that time, we are waiting for the OT and PT services to start. And aside from that, just trying to get into some sort of daily routine in our new environment.

Our baby girl is such a miracle and such a testament to God’s love and faithfulness. This is a difficult road that he has placed us on, but we look forward to seeing what He has planned in this next chapter.

Above all else, we know that this is not something we would have picked for ourselves, but that He knows best and that He will not have us endure anything that does not have a purpose. We just pray that we can continue to obey Him daily and follow His voice.

This article I read today provided truth and I thought I would share an excerpt:

His Sheep Follow Him Because they Know His Voice
by Katie Montei

The strongest desire I have felt during this painful season is for it to be over. Sometimes when we feel trapped in the valleys of life, we forget to listen for what God has for us today. I need to remind myself daily of the Psalmist’s declaration in Psalm 27: 13-14, “I am still confident of this: I will see the goodness of the Lord. Wait for the Lord; be strong and take heart and wait for the Lord.” I have learned that it’s alright to feel pain; God has never told me to ignore my pain, as if I were not hurt at all, but instead he directs me to continually offer it to him. When I come before the Lord in quietness of spirit, opening one hand in offering my pain, one hand in trust and hope, patiently waiting on him, I am able to hear his voice…The voice of God is not always so palpable, his presence is not always so concrete, but it is in the getting on with life and the hard work of living out our faith that we still need to listen carefully to the Shepherd who says, “My sheep listen to my voice; I know them, and they follow me…no one can snatch them out of my hand.” John 10:27-28.

It was a busy day.

We showed the rental house this morning and are praying for wisdom and discernment on the best person/family to occupy the home. We want to be obedient to Him; that is the best way to live. Praise God that we have received several leads to follow, which is different than last summer. We would like to have the home occupied by July 1, 2008.

While driving around today, Ella took a little snooze in the car.

I had an appointment in central Denver with my ear surgeon. I had ear surgery in August 2006 and need my hearing and ears checked 1x per year. Fortunately, I checked out well. Also the appointment was straight-forward and quick, so Grandma didn’t have to do as much work as yesterday when it came to holding and entertaining The Bun.

After the doctor, we headed back home and had the Early Intervention Program reps visited our home to evaluate Ella. After a 2 hour appointment, they determined that Ella does qualify. They are recommending OT once per week and PT twice per week. The coming weeks will be telling. Services are supposed to be in place no later than 28 days from now, likely sooner.

Our goal is to find therapists that work for the Early Intervention Program plus also accept private insurance. This way, we can use them for free through the Early Intervention Program and supplement more visits (if needed) via our health insurance. Please pray that we will come across the right individuals to help Ella grow and thrive. These therapists play such a vital role in her development forward. We were so blessed in Gainesville with a great OT and PT. We can only hope that we find 2 more special individuals that will come to love Ella and want to help her.

Once the appointment was finished, Ella decided that she wanted to read her Elmo book…she was rolling around getting really excited.

When it cooled down a bit, Grandma and I took another walk to Super Target. Although I cannot take Ella inside, it is still nice to walk to the Super Target, get some exercise and just watch people from afar. The weather in Denver was beautiful today and it is so nice to be able to get outside with Ella.

And of course, we always have to watch the summer sunset from our patio. The Bun looked so cute in her hat.

We praise Him for our baby girl. Almost each day, we are given an opportunity to share about Ella and our journey. This morning, the potential renter for our home was clearly touched and gave me a hug when leaving. The opportunities rise up all the time.

And each time we share, we are reminded to trust Him…to trust Him completely.

This is where Ella spent most of the day.

I had 2 doctor appointments for myself, since we have not been home in nearly a year. So, I trained Grandma on how to hold her, use all the good toys to distract, increase oxygen when needed and it worked. My mom followed me to both appointments. Since I was a new patient, the appointments lasted 2 hours each.

For the second appointment, the doctor office was so close to the house that we walked! Ella was stylin’ in her hat and shades!

Needless to say, Grandma is a bit sore this evening from holding the Bun for so long. But the moments where she decided to calm down and get some beauty sleep…those were some precious moments for Grandma.

We have two appointments tomorrow: one for me and one for Ella. So, it will be another busy day. We’re already looking forward to Wednesday when there are no appointments scheduled.

I must take the time to mention: LoriAnn Kuhn mentioned placing Ella rear-facing but in the front seat. Pure genius! I know it is not the most safe, but we tried it for the first time on Sunday during leisure time and today for the doctor appointments. It works well…so much better than the back seat. She is so much calmer because she can see me. And lately, we had Daddy or Grandma riding in the back seat, so she could watch them too!

When she pulls out her binky or her cannulas, I can easily stick them back in to make her happy. When she begins to have a meltdown, the oxygen tank is easily within reach. And if I need to stop and pull over, at least I can comfort her without having to get out of my seat. That is much safer than pulling over and hanging out the back seat. So, I never thought of placing her in the front seat, but with the auto detect for disabling the airbag, it makes things way easier. I feel so much better about the idea of driving with Ella now.

Ella will be evaluated tomorrow as part of the Early Intervention program, which is a federal and state funded program. Depending on their evaluation, they will decide how much OT and PT Ella will need to overcome her setbacks. The good part is that this program is free and separate from insurance. We have not been able to locate a private OT or PT to come to our home, so we’re hoping that maybe we can find good therapists for Ella through this free program.

One last prayer request: we were unable to sell our home last year due to market conditions, but needed to downsize since we knew Ella was coming. We downsized into a townhome and just three days before we left for Florida, the house rented to a wonderful family.

As of last weekend, our amazing renters moved out of our house and moved back to Seattle. So now we need to search for new renters. Being on one income makes this even more of a necessity! Please pray that the right person/family is guided to our house. We were so blessed this past year to have renters that not only took care of our house, but loved our baby girl virtually.

Thanks for all the continued support and prayers, even since we have returned home to Denver.

Thank goodness today has been somewhat low key.

Last night, we turned down Ella’s oxygen per the directives of her new pulmonologist. She was at 300ccs. That was all fine and dandy except that every time she moved during the night, the pulse oximeter would alarm. Each time, I would run into her room thinking that her cannulas had come out of her nose. Finally, I began to notice a pattern. It was simply the action of her moving over; it is that sensitive. Needless to say, I am running on low steam since I was up pretty much all night.

We received a call today from the pulmonologist. First thing, I asked about the pulse oximeter alarming all night while trying to maintain saturations of 92-94. Also, I told him that we’ve tried to keep her on 500ccs liter while she has been awake, but she dips down into the mid to high 80’s too often. So, the plan is to try 750ccs while she is awake today and 500ccs tonight. I’ve changed the settings on the pulse oximeter to try and minimize alarming, but am hoping that her oxygen level will simply be adequate and we will not find ourselves running into her room countless times throughout the night.

The pulmonologist reported that Ella’s echocardiogram yesterday looked great. The anatomy of her heart appears normal, it is functioning well and there is no sign of pulmonary hypertension. This simply means that her heart medicine is continuing to do wonders for her.

Speaking of heart medicine, Josh was a great husband and ran to the compound pharmacy all the way across town early this morning before work. This eliminated a trip that Grandma & I would have needed to make with Ella, just to give her early morning doses.

It was an absolutely beautiful day in Denver – – the weather was just perfect. This morning, it was slightly crisp, but it was warm in the sun. You could see the snow capped mountains and downtown from our patio. We decided to lounge back in the patio chairs. Ella fell asleep while we were reclined together in the chair. It was just the relaxing moment that I needed.

Later, it became a bit warmer and Grandma and I decided that we needed to get out of the house. I took the time to put together a new jogging stroller that I received last year as a gift and thought we would try it out. I figured that it might work well for Ella since the seat is more reclined. After all, The Bun’s favorite position is lying down.

As we neared our 15 minute stroll to Super Target, Ella fell asleep in the stroller. So cute…

Grandma went inside to get a few groceries for our dinner tonight and I just stayed outside on a bench watching Ella and noting all the busy people coming and going. As I looked out at the urban city and watched the buzz of activity, it did feel good to be back in familiar surroundings.

I’m looking forward to tomorrow. Josh is going to give me a break. It starts with as much sleep as I want in the morning and a day of running around with my Mom.

Thank God it’s Friday…and each day we thank Him for our precious girl.

Wow, today was exhausting.

It started with trying to find a pharmacy that would make Ella’s heart medicine correctly. We thought we located one, so we dropped off the prescription yesterday, for pick up today. Instead, they called and told us that based on the way they would compound the medicine, it would be $428.99 for a 30 day supply!

It was $72 for a 30 day supply in Gainesville. But we are low and only have enough medicine for another 24 hours, so I was stressing out. I finally found a place that would turn it around quick enough and would make it correctly. They were nice enough to accept my fax of the prescription to start making it (luckily I had made a copy), but they needed the original prescription when we pick it up. So, this meant an extra 30 minute drive across town to pick up the original prescription. All said and done, the new pharmacy will make it for a cost of $196 for a 30 day supply. This means more back and forth with the insurance company to fight for them to cover the medicine that she needs.

We left the house around 12:15pm to head to Children’s Hospital. Once again, the building is impressive.

First, Ella was scheduled for an echocardiogram. The technician was great; you can tell that they work with kids all the time. After about an hour, she reviewed the images with the cardiologist. He came in and explained that there were a couple of images that they were not able to get, so they might have to sedate her. Ella has never been sedated for an echo, so I was not real thrilled about the idea. I explained my position, so he went ahead and tried to get the measurements themselves. This meant another 45 minutes of sitting still for Ella.

When the echo was complete, they were still not able to locate 2 measurements of pulmonary hypertension. They felt it was because Ella was moving too much. It was indicated that it is likely that she will need sedation the next time they perform an echo.

From there, we went over to pulmonology. We were 45 minutes late to see the pulmonologist because the echo took so long. When we went back, they wanted to weigh her and get all her vital stats. When she weighed in, she was 14 pounds, 3 ounces. This didn’t sound great to me because she weighed in downstairs the other day at 13 pounds 12 ounces. All of a sudden, I began to wonder if she has started to retain fluid.

We are pleased that we picked Dr. Steve Abman to monitor her heart and lungs. He is knowledgeable, has great bedside manner and you get the sense that he truly cares. That is so important to me. He did a few things: increased her dosage of sildenifil, decreased her oxygen to .5 liters of oxygen via her nose cannula, ordered an overnight saturation test with a pulse oximeter, and ordered a swallow study to ensure that she is not micro-aspirating. Also, Dr. Lewinsky was present for the exam and meeting too. This ensures that 2 pulmonary doctors are familiar with Ella, in case we have any concerns.

Dr. Abman wants to see her again in 2 months, for a follow-up echo and visit. He asked who we picked for her primary care, so we mentioned Dr. Steve Perry and his face lit up! He ensured that they will coordinate her care together. Apparently, they have worked together frequently. That was a total blessing. I definitely wanted a pediatrician and pulmonologist to work together on Ella’s care. So this was a big accomplishment for the week.

Dr. Abman’s approach to pulmonary hypertension is different than Dr. Kays. In this way, we almost have to re-train our minds. Dr. Kays wants Ella to maintain high saturations whereas Dr. Abman feels that her prime saturation range is between 92-94, awake or asleep. His basis has more to do with the in-depth research and studies showing that there can be too much pressure in the lungs when the pulmonary vessels are too dilated. He did mention that he reviewed the echo on CD from 5/1/2008 and thought it looked good. He is positive about her prognosis moving forward.

Tonight, we have Ella on .5 liter and she is saturating 97 with a heart rate of 125, as she is on her way to deep sleep. According to Dr. Abman, we could wean the oxygen more. He gave the flexibility to wean until we got her to the 92-94 range. This is such a different approach to Ella’s care. We will see where she settles in. Either way, they will be coming to give us a special pulse oximeter that will track her heart rate and saturations while she is asleep one night. Once this is reviewed by Dr. Abman, he will be able to tell if this is the right level of oxygen therapy for Ella.

Before we left, we mentioned the concern about fluid retention. The doc suggested that we go down to the Special Care Clinic and use the exact same scale, so we can see if it is accurate. I’m so glad that he made that suggestion. She weighed 6.2 kg the other day and 6.3 kg today, on the same scale. This makes me believe that maybe she is okay on the fluid side. We’ll just have to continue to monitor it.

I’m so glad that my Mom is still here to help me with Ella for the next week. It makes me realize how tough it is going to be to pull off life in solo mode.

We’re just so blessed to have this little girl. Each day we are around other people and share our story, we are reminded that she is truly a miracle.