The last 24 hours were tough.

Ella was up all night last night, literally every 30 mins or so. She would try and get comfortable, but wake up fussing and crying. I think it was tummy discomfort. We have not had a night this rough in about 2 weeks.

We went back and looked at the blog to see her progression of food on this new formula. Here is a snapshot:

Wed, Oct 1st: Care Conference. BUN of 9. Decided to try EleCare, started with 20 kcal, rate of 30ccs per hour continuous.
Thurs, Oct 2nd: Increased to 24 kcal, rate of 30ccs per hour continuous
Fri, Oct 3rd: Increased to 26 kcal, rate of 30ccs per hour continuous
Sat, Oct 4th: BUN of 34. Same schedule: 26 kcal, rate of 30ccs per hour continuous
Sun, Oct 5th: Same schedule: 26 kcal, rate of 30ccs per hour continuous
Mon, Oct 6th: BUN of 34. Increased to 27 kcal in the evening, rate of 30ccs per hour continuous
Tues, Oct 7th: Increased to 27 kcal at a rate of 31ccs per hour in the evening continuous
Wed, Oct 8th: BUN of 33. Increased to 28 kcal in the evening, rate of 31ccs per hour continuous
Thurs, Oct 9th: Increased to 28 kcal at a rate of 32ccs per hour in the evening continuous
Fri, Oct 10th: Same schedule: 28 kcal, rate of 32ccs per hour continuous
Sat, Oct 11th: Changed the daily feeding schedule: 45ccs over one hour, 60ccs over one hour, 75 ccs over one hour, 90ccs over one hour, 100 ccs over one hour. Continuous feed at 34ccs for 8 hours overnight. **Started to have challenges**
Sun, Oct 12th: Changed the daily feeding schedule: 100 ccs over one hour, 5 times per day. Continuous feed at 32ccs for 8 hours overnight. **Continued to have challenges** Started to behave in a way that you could tell she did not feel great.
Mon, Oct 13th: BUN was 37. Tried to feed 100 ccs over one hour, 5 times per day, but missed a bunch of food due to hospital discharge, continued to have food challenges overnight.
Tues, Oct 14th: Went back to 100 ccs over one hour, 5 times per day. Continuous feed at 32ccs for 8 hours overnight. **Continued to have challenges, especially overnight**
Wed, Oct 15th: From 9am -11am, used 28 kcal at a rate of 32ccs per hour, continuous. From 11am – 3pm, used 28 kcal at a rate of 25ccs per hour, continuous. From 3pm forward, used 26 kcal at a rate of 25ccs per hour, continuous.

So after consulting with Dr. Abman (pulmonologist) and Dr. Soden (GI) today, we ended up at trying 26kcal at a rate of 25ccs per hour, on a continuous feed. Also because we are reducing her volume of food so much, we are skipping her dose of diuretic this evening and her morning dose.

It stinks to have to take this many steps backwards. But we want to go easy on Ella with the food. If we cannot get her to tolerate the EleCare, then we have to look at placing a tube in her nose and by passing her tummy altogether for a time frame (NJ tube). That is not something we want to have to do, so we are more than willing to go slow.

I think it is just discouraging. She had her surgery on September 3rd and she is still having a hard time with tolerating food in her belly. We expected to have to vent her a lot because the nissen would be tight, but digesting food was not an expected problem.

It is hard when she can’t sleep at night, when she is retching a lot, clearly uncomfortable, and there is nothing you can do to make it better for her. It’s just a rough deal to endure.

We have a nursing visit tomorrow morning from a skilled nurse. She will come to our home to do an assessment, weigh her, etc. Eventually, this is the same nurse that will come to our home to administer Ella’s synagis shot. I’m so excited that insurance approved the nurse to visit our home for this purpose. With winter approaching, the less we have to take Ella out, the better.

Also, we have to go to the Children’s Hospital to weigh in and get labs done. Once we have that information, we will consult with pulmonology to see how they want to proceed with the food and diuretic balance. Thankfully, she is not having any respiratory issues, likely because she is too dry.

Please say a prayer for sweet Ella. She is having pain of some kind (we think it is the rate and density of the food). We pray that the doctors will be given wisdom on which food and combination of meds will be the best for her.

Also, pray for us. We miss our girl…tremendously.

Ella’s night was restless and she was not comfortable.

From midnight until 4am, she did not stir much. When she did and I ran into her room, I noticed that her food pump was not running (flow error). Ahh…that is why she has been so quiet the past few hours. As soon as I turned on the food, I was up every 30 minutes thereafter.

We had a visit from a nurse at our house today. We requested this service when we were in the hospital and insurance approved it. She will come once per week to assess Ella, weigh her, etc. Also, she will be able to administer shots. This will be great, especially for synagis shots this winter season.

The nurse was listening to me describe all of Ella’s feeding issues, and then she asked if we had tried a farrell bag. I had never heard of the term. Apparently, you can get a extension set that fits into Ella’s g-tube. At the top of the tube, there is a “Y” connection. The food bag connects to one side with a farrell bag attached to the other side. The farrell bag allows for venting while the food pump is feeding. It sounds good because air/gas is one of the biggest problems that we are having right now. Especially overnight, I am venting once every 30 mins – 1 hour. For those of you that do not realize, that is a lot of venting! Maybe this new set up will help Ella. Unfortunately, it will take a few days for it to arrive.

Ella was fussy most of the morning. She did not like the nurse visit (she weighed in at 7.88 kilos). Overall, she was feeling lots of discomfort from the 26 calorie food and therefore was simply unconsolable.

We got into the car to drive to the Children’s Hospital and Ella seemed relieved at the change of scenery and the fact that she was not eating! We went to get labs done. It took two sticks to get what we needed. Her BUN is 27. Much better. Going the right direction. She weighed in at 7.8 kilos on the pulmonary clinic scale. So, she has lost weight this week but I am not surprised considering how much less food she has received.

When we got back home, we made the EleSure with less concentration at 24 kcal and started her feeding continuously again at a rate of 25ccs/hour. She started to do really well. Kelly played with her and she was in a great mood, smiling and all. We haven’t seen this behavior in days. I think the food is a huge deal; less dense food is better for her these days. The wrong food can just make her really uncomfortable and extra fussy. We’ll see if the farrell bag solution will help her overall, especially when we try and move her towards a normal feeding schedule.

It was such a nice reprieve to see Ella feeling better this evening. We pray that she continues to heal and tolerate food.

Psalm 25:4-5
Show me your ways, O LORD,
teach me your paths;
guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.

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.

Ella had a great day. She’s doing good on the 24cal food at a rate of 25ccs per hour. This has played a big part in her mood.

We tried feeding her some apples, but it didn’t go well. She’s definitely taken a step back in this area. There was a time when she’d open her mouth for more food, but now, she just melts down. It’s hard to see this backward progress, but Tina reminded me that we were here before, and she’ll come around again.

At this very moment, the Bun is asleep, and Tina, Kelly, and I are outside enjoying a mild October night in Colorado next to our fire pit.

I know there are many of you out there who don’t comment, but you do check us out almost every day. Thank you for keeping up with Ella’s progress and for all support.

Another good day for the Bun.

Tina and Kelly were up early to go to the opening of a Home Goods store, do some grocery shopping, and run some other errands. This left me alone to take care of our girl. Before they took off though, Tina snapped a few pictures of some visitors on our neighbors lawn.

Ella and I had a great time playing on her mat, cuddling, snuggling, and making each other smile. There were also a lot of funny faces and noises involved too. So great to have these times with my girl. I really try to soak them in, because I know her behaviors and times of feeling good tend to ebb and flow.

She handled her feeds well all day and she only needed to be vented once tonight.

Tina and Kelly didn’t get home ’till 6:30. About 30 minutes before they did, I had a bit of a scare with Ella. She was laying in her crib when she began to retch. I picked her up and she really seemed to be having trouble. I set her down real quick and ran over to the concentrator to increase her oxygen. I went back to pick her up and she couldn’t catch her breath.

While holding her, she arched back in a state of panic, but she couldn’t clear her airway. She was turning more blue, then she got real calm. She didn’t fully pass out but she looked dazed. Thoughts of CPR were racing through my head. She was breathing, but still struggling a bit. I was able to get her to drink which helped clear her out. It took her a few minutes for her color to return but it finally did. Man…these are not fun moments.

By the time Tina and Kelly got here, she was back to her smiley self, as if nothing happened. Glad to see it turn out this way…thanking God that it did.

Psalm 16:7-8 (New Living Translation)
I will bless the Lord who guides me;
even at night my heart instructs me.
I know the Lord is always with me.
I will not be shaken, for he is right beside me.

Thank you Lord for always being here with us…and thank you for our sweet child, Ella Renae.

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 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 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.

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

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.