Ella seemed to be doing a bit better today. Although she was not that excited to wear a Halloween costume. She could tell that she was getting lots of attention by her outfit, but I think it was uncomfortable. Ella loves to grab her feet and kick. The outfit made it tough to do her daily foot kicking exercises.

The home nurse came to listen to her. She affirmed that Ella has good air flow and that the upper airway congestion persists, but it was better than last Friday. That was reassuring. Also, Ella weighed in at 7.9 kilos (17.7 lbs), an increase from 7.7 kilos last Friday. Weight gain is good for Ella. It confirms that the increase in volume of food is helping. Now, we just need to make sure that it is a good weight gain. As we put her to bed tonight, her heart rate did seem a bit higher than normal. Again, we are hoping it was good weight gain and not fluid retention.

The occupational therapist visited today and it was a successful session for Ella as she sat in her chair for 45 minutes. She already made progress from last week, simply with all if us playing around her mouth more and making her drink diluted juice again. Progress is slow, but Ella is following the same pattern as last time in Gainesville.

The rate of 31ccs per hour on a continuous feed seems to be going well. We are going to stick with that volume for a few more days before we try increasing the volume more. Our goal of 32 ccs per hour is not far off, although we were supposed to be using 26 kcal and we are only using 24 kcal. I’m hoping that adding corn oil will do the trick. Once we can see some solid weight gain on 32ccs at 24 kcal formula, we can try working towards bolus feeds.

We are scheduled to see the pediatrician next week. That will be good to see Dr. Perry again. It has been a long time.

I couldn’t believe that it was Halloween today…mostly because it was 70 degrees and sunny. It is usually bitter cold and/or snowing on Halloween in Denver. I am so thankful for the last few days of sunshine. I’m not mentally ready for snow, but I know it is around the corner.

Ephesians 3:20 (The Message)
God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.

Ella was feeling better today. Her cold is still hanging on, but you could just tell that she was feeling more like herself. I mean, she even kept adjusting her headband to an 80’s aerobic style. If she keeps up the foot grabbing too, she’s going to turn into an Olivia Newton John look-alike.

The PT session went great. Ella practiced sitting up, rolling over and having tummy time – – all things that will help build her core strength. Once again, we’re feeling so blessed that we have a great PT that understands Ella and has a sincere desire to help her reach her goals. That is a rare find.

Today, Grandma Eusey altered Ella’s halloween costume, so it can accommodate her g-tube. Nope, we can’t ruin the surprise. You’ll have to wait to see the Bun dressed up!

We know of another family that has arrived in Gainesville to have Dr. Kays help save the life of their baby with CDH. Please pray for their baby girl and her brother (twins) that are due to arrive in December (You can read their story here).

I ran into an inspirational devotional message this morning regarding burdens and I wanted to share an excerpt:

Our challenges vary greatly: a single Christian mom may have the awesome responsibility of raising children in an ungodly world that seeks to destroy them; an angry misunderstanding may leave the head of a household without a job; or a past sin can result in deep scars of guilt that weigh a person down. Regardless of the type of problem or its source, the question is, How are we to handle the burdens that come our way?

Jesus never vows to totally remove our difficulty, but He promises to deal with our trial in such a way that we no longer have to carry its weight. Some distressing situations—like terminal illness, caring for a disabled relative, or the death of a loved one—are permanent, as far as this life is concerned. Some people might find the idea of an ongoing trial discouraging, but the Christian must remember that we are not to handle these matters in our own strength. God wants to lift our load and carry it for us. He personally invites every one of us who is weary to find refreshment in Him.

Of course, all of us would prefer to bypass painful circumstances, but the Lord knows that our hardships and heartaches—the things we are unable to handle on our own—form the fertile soil for our spiritual growth and increasing dependence upon Him. How can we know Jesus Christ as the burden-bearer unless we get under a burden ourselves, try to deal with it our own way, and then experience the relief of letting Him carry its weight?

Oftentimes, the difficulties God has sent or allowed in my life have been so unpleasant that I prayed He would remove them. However, when I looked back later and realized all that my suffering had taught me about the Lord, I prayed, “Thank You that You knew better than I did. Thank You for not making it easy.”

Psalm 55:22 (NLT)
Give your burdens to the Lord,
and he will take care of you.

Ella didn’t seem to feel as good today. She seemed to be coughing and sleeping more than usual.

In the morning, she was acting like herself while she played on the mat. But then, she seemed to get tired easily and would have a change of mood with no real warning. The afternoon was harder. She was resting during the 2pm hour when the PT arrived. So Kelly tried to wake her up and coax her into a PT session. First, she seemed okay and then she simply decided that she did not want to have anything to do with PT. After a major meltdown and lots of cuddling with Kelly, she went back to sleep.

We’re hoping and praying that the sickness subsides and does not get worse. So far, it appears to all be in her head area versus her chest and lungs. This is much better, but not ideal.

Sometimes it just hits me and I wish I could make it all go away for her. It just seems like she rarely ever gets a break. It always seems to be some medical condition that is ailing her.

Her increased food seems to be going well. We increased to 29ccs per hour (24 kcal) last Friday. I’m thinking we might try increasing soon, maybe tomorrow. We’ll see how she does tonight.

When she had enough of the day and decided to retire, Grandma Eusey was there to cuddle and rock her to sleep.

1 Peter 5:7 (Amplified Bible)
Casting the whole of your care [all your anxieties, all your worries, all your concerns], once and for all on Him, for He cares for you affectionately and cares about you watchfully.

Ella had a good day. She is still fighting her cold – – we’ve used lots of kleenex and wipes for her nose.

Today was spent unpacking more and get settled into the house. It was a day of organizing, cleaning and sorting. Ella spent time watching Barbie and Little Pony’s while she sat up in her chair.

Grandma Eusey came this evening. We gave Ella a bath and she spent time rocking Ella to sleep. Grandma looked like she had died and gone to heaven while she kissed on the Bun.

Ella seems to be tolerating the continuous food at a rate of 29ccs really well. We will likely wait 1-2 more days before we try the next increase.

Kelly is still in the midst of her sickness, while Josh and I are trying to battle our symptoms. Hopefully, we don’t get Grandma sick and all of us can be on the mend soon.

Grandma is going to help unpack and get the house even more settled. Next week, I will start my new job. So, I’m trying to make the most of my time off!

We love Ella Renae. She is such a blessing and provides a clear reminder of His love for us.

Psalm 18:1
I love you, O LORD, my strength.

We were too tired to write last night, but it has been a rough day or so.

Somehow, Ella has gotten a cold. Between yesterday and today, we have emptied a box of kleenex and gone through tons of wipes. Saline drops and the bulb syringe are not high on Ella’s list of things she enjoys. Her nose is stuffy and runny, all at the same time. This is making it hard for her to breathe and get her oxygen therapy. Also, she has a distinct cough that I have never heard come from her. It makes me a bit worried. Right now, there are no other symptoms and for the most part, she still seems happy a lot of the time. Watching, waiting and praying that it is nothing too serious and that we can stay away from the hospital.

The nights have been tough these days. I can remember a few times at the most recent 7 week long hospital stay where she slept the entire night. And she has slept soundly one time since she has been home during the past 2 weeks. You just never realize how much you appreciate sleep until you don’t get it, night after night.

Today, the home health nurse visited. She weighed Ella in at 7.73 kilos, down from 7.88 kilos one week ago. That is a good amount of weight loss for Ella. We know that we need to stop the trend of weight loss, but don’t want to change and increase rate or volume of food too fast. So instead of giving her 24 calorie at a rate of 27ccs, we have increased it to 29ccs per hour. Slow steps in the right direction. We’re hoping tonight is a good night for her; we’d love the rest too!

The Farrell bags came in the mail. We’re not as impressed with the solution as we had anticipated. You have to ensure that the venting area is level or lower with her belly, which means that it has to lay in the crib. Once she is there, you cannot pick her up. For us, it is definitely only a solution we want to try at night on the continuous feed.

Since Ella is steadily losing weight, we are going to be a bit more aggressive and see if we can’t work her up in volume. If we increase her over the coming days and notice we are having problems with venting specifically, we will pull out the Farrell bags. Since it is an expensive solution and I’m not crazy about it, I’m hoping that we can return the unused bags to our DME company.

Along with Ella not feeling great the past couple of days, Josh has not felt great either. He’s been exhausted and has a general achy feeling. He’s simply not feeling like himself. For awhile now, he has complained about his kidneys, thinking that there might be some type of issue. Today, he was so tired of not feeling well that he went to the ER! For those of you that might not know Josh that well, that is HUGE for him. He does not like to go see doctors. So for him to get to that point, he must have felt rotten.

Maybe he was just feeling sympathy pains for Ella. Either way, he went alone while I cared for Ella this morning. Next thing I know, I’m getting pictures from his iPhone. Yep, he got an IV, blood labs completed and they took a chest xray. They really wanted to be able to tell him if they could detect anything wrong. A few hours later, they confirmed that he has a clean bill of health – praise God! It is frustrating to feel pain and yet also feel like no one is around that can help you. I’m sure this is what Josh feels like these days.

I can’t believe that Ella is 15 months old today. I always like to take these opportunities to reflect back on what has happened. What were we doing 1 year ago today?

Wow, wow, wow. Anytime I take a moment to reflect back on pictures from the NICU, it blows my mind to think that Ella is with us and is looking good, considering her circumstances. You can tell that she is a trooper and will endure anything that is before her.

We praise and thank Him for Ella Renae and the lives she has impacted.

Too tired to write, but never too tired to share Ella smilin’ at the camera.

Ella had a great day. You could tell she felt well.

The day started off with physical therapy at 9:30am morning. It is such a blessing to have our new PT. You can tell that she “gets” Ella. That is so great.

The PT has gone very slow this week, letting Ella get used to her. And Ella has gotten accustomed to Kelly too. So this morning, I snuck away and would peek in to see how things were progressing.

Ella responds so well to both of them, definitely a comfort. And you can tell that Ella has not lost her flexibility. She swings her foot up high and makes it look easy. Cheerleading someday?

The highlight of the day is when Ella started babbling. We have not seen this since she was feeling better, weeks ago. But today, she decided that “da, da, da” was her favorite cheer. Up till now, she has been mostly silent without a lot of babbling. It was exciting to hear the exploration of her vocal cords.

She seems to be tolerating the EleCare 24 calorie at a continuous rate of 27ccs. We are still waiting for the Farrell bags. Once we have the bags, we can look to see if giving her more volume or a more dense food would make sense. But right now, we are going nice and slow.

The home nurse will be visiting on Friday. I’ll be anxious to see Ella’s weight trend. If we have it in time, she is going to administer Synagis.

It is so nice to see Ella feeling more like herself. I’m not sure how long this is supposed to last, but I am soaking in every moment.

Psalm 28:6-7
Praise the Lord!
For he has heard my cry for mercy.
I trust him with all my heart.
He helps me, and my heart is filled with joy.
I burst out in songs of thanksgiving.

Ella had a rough morning. Thankfully, it became better by late afternoon.

She woke up earlier than normal with gas pains and diarrhea. I’m not sure how long she had a soiled diaper because she also had a mild diaper rash. We cuddled for an hour or so until the pain subsided and then she went back to sleep until 10:15am or so.

That was a blessing in disguise because Kelly had a migraine. On average, she gets a migraine once per week. Yuck, I can’t relate. I think headaches or migraines have to be one of the worst things to endure. Although I have never had a migraine, so I feel blessed.

Based on them both feeling under the weather, it was a calm day for the Bun and Kelly. They cuddled a lot in the rocking chair.

We had our first session with the occupational therapist. We have homework for this next week. She asked us to start trying to play around her mouth, kiss her mouth, take various fabrics and wipe them across her mouth and lips. Also, we are to take her binky and dip it in apple juice to get her used to the flavor and taste. So far, both of these things are very challenging with Ella. She doesn’t like things near her mouth or making her try to drink beverages from her bottle, especially when she didn’t ask for it.

Ella had another good day.

It was a little rough because we had to return to the hospital. More labs and another weight. She melts down and despises the whole experience. And you really can’t blame her. She likes getting in the car and having the change of scenery. But once she realizes where we are and what we are doing, the meltdowns begin.

As of tonight, we are not sure what her labs look like. Hopefully, we will find out tomorrow. Regarding her weight, she lost more again. One week ago on discharge, she weighed 7.9 kilos (17.4 pounds). Today, she weighed 7.7 kilos (16.9 pounds). She has been tolerating the 24 kcal at a rate of 25ccs per hour (600ccs total volume of formula), but this is a significant amount less than what she was receiving the past few weeks.

Although I have not seen the labs, I decided to try and increase her rate to 27ccs per hour starting at 7pm tonight. This will give her 48ccs more formula in a 24 hour period. We’ll see if she tolerates the change overnight.

We had our first physical therapy appointment in our home today. The last one was in the beginning of August. Before that, it was several weeks prior since our physical therapist switched. Bottom line: the last time we were on a consistent schedule was Gainesville which was May 2008.

This physical therapist is willing to come to our home 4x per week. We’re excited about that because Ella has so much catching up to do. The session today was one of the best I have seen. Ella did great – – she was tolerating a lot and having a good time with stretching, kicking, grabbing. Kelly was able to watch and catch on to some techniques that she can use each day when handling Ella, things that will help Ella get stronger.

It was a great baseline session to measure her future progress and it provides an assessment of her overall clinical picture. When she is feeling good, she even tolerates and has fun with PT.

We did not receive the Farrell bags today, as promised. But we’re hoping that we get them tomorrow and that the increase in food volume will not cause too many problems. Our goal will be to get in touch with her pulmonary doctors tomorrow to review the labs and our current food & medicine strategy.

We’ve enjoyed the past few days with Ella feeling well. I know that there is no promise in her continuing to feel good as we adjust her feeds and medicine. But it is my hope and I cling to the truth that God is in control and choosing to use Ella’s little life in whatever way brings Him the most glory.

Thank you to all of you out there that check on our girl and pray for her – – you know who you are. It means so much to know that Ella’s smile can be shared and enjoyed by many who are looking to make the most of each day.

Psalm 40:8
I desire to do your will, O my God;
your law is within my heart.

Ella did better last night. I was still up several times, but she did not seem like she was having as many tummy issues.

I think that the volume and density of the food is helping. Although she still needs to be vented frequently, she does not push back a lot of food. This means that she is tolerating the volume well and that the volume of food is not causing too much pressure. Throughout the day, she is not fussy and complaining about a lot of pain. We think that the density of the food is not causing tummy discomfort – thank goodness!

We’re excited to try the Farrell bag solution. It will not arrive at our door until Monday. I’m really hoping that it provides Ella with a higher level of comfort and prevents us from having to vent constantly, especially overnight.

Ella acted more like herself today. Although, there are still some instances where she seems to not handle herself well. For example, she melts down when we change her diaper. She never used to do this, but since this recent hospitalization, she loses it. Or giving her a bath. She never loved them before but she would sit and tolerate it and sometimes flash me a smile if I made a silly face. Over the last few weeks, she simply loses it and melts down. So aside from the physical changes in Ella since surgery, she definitely acquired some not-so-favorable learned behaviors.

The plan is to keep her comfortable on a continuous feed of the 24 kcal formula over the weekend, at a rate of 35ccs. We’re hoping and praying for a restful night of sleep.

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