Posted (jooosh) in All Posts on April-30-2008

The picture says it all. Ella had a busy day.

She had her longest / best PT session ever with her new therapist that came to our apartment. We’ll miss seeing Claudia on a regular basis, but we’re very excited to have Ella getting in house PT sessions 5 days a week!

It was a GORGEOUS day here in Gainesville (just like the photo gallery below). There was no way we could stay in for lunch so we headed over to the Tioga Town Center so Ella could enjoy the fresh air.

Tioga Town Center

We sat at one of the tables outside of Starbucks. Very comfortable until a couple people around us began to smoke (bleh). Besides the fact that Tina and I are not fond of being around it, it can be incredibly detrimental to Ella. So, when people would start smoking Tina would take Ella for a walk until the air cleared.

While there, we ran into one of the respiratory therapists that took care of Ella in the hospital! What a great surprise to see her. She had mentioned what a funny coincidence it was because just yesterday she was looking at our blog with some other NICU nurses. So great to know that Ella has her fans checking up on her in the NICU :-).

Tomorrow will be an exciting day. A close friend of the Boemler Wareings, and a HUGE Ella fan is coming from three hours away with her husband to bring us lunch! Is that crazy or what!!! She’s been following Ella’s story since last October and wanted to meet her in person before we leave the state.

We feel so blessed to have all these people around the country (and globe!) that love and care for our baby girl.

Thanks to YOU for being one of Ella’s fans. We love all of you.

Posted (jooosh) in All Posts on April-29-2008

Mmmmm….tastes like chicken.

Ella had some bad gas pains today, and I don’t think it was from the flamingo. She would just cry in waves, so much that it started to make me cry. Man, it hurts to see your child in pain. Personally, I feel that Ella has already had her fair share of pain, at least enough to last into her 30’s.

Fortunately, she’s doing better tonight. I know because we enjoyed watching American Idol together. =)

Oh how far we’ve come!!! 40 weeks!!! Holy Moley!!!

Thank you Lord for this precious child.

Posted (Tina) in All Posts on April-28-2008

Ella had a rough night. All my fault too.

Not sure how it happened, but sure enough, the med port on her feeding tube was open. So, instead of all the corn oil and formula with meds going into Ella’s belly, it went all over her pajamas and her bed. Once she started fussing, it was not like a little had come out – – it was all 225ccs. I can’t believe that she tolerated being wet for that long.

In the midst of sleep, I could hear her being restless throughout the night. Josh even mentioned that it smelled in the room, like the cats had eaten too much and left some on the carpet (trust me, formula smells nasty). However, nothing registered in my compromised state and since Ella wasn’t fussing, I didn’t move from the bed!

Anyway, this made for a long morning. The poor Bun was simply tired and fussy, at times not consolable. Since she was still this way around 11am, I called and canceled physical therapy. I just felt like she was too wiped out and would not be worth trying to make her work through a PT session. Plus today required us packing up and driving to the session. That makes for a field trip in the car on top of the session. I felt like that would be a lot to ask of Ella.

As the day progressed into the late afternoon and she had more beauty sleep, she started to behave like herself.

Our goal tonight: let’s make sure we do not have a repeat of that movie!

Posted (Tina) in All Posts on April-27-2008

When I run errands and have time to myself, I listen to praise songs in the car.

Most of the time, I do not think about it. But when I stop and reflect on what has happened to us this past year, His love and goodness to us, and what a miracle our baby girl is, I can’t help but let the tears flow. This song did it to me this weekend. You can listen too:


Who Am I
by Casting Crowns

Who am I, that the Lord of all the earth
Would care to know my name
Would care to feel my hurt
Who am I, that the Bright and Morning Star
Would choose to light the way
For my ever wandering heart

Not because of who I am
But because of what You’ve done
Not because of what I’ve done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapor in the wind
Still You hear me when I’m calling
Lord, You catch me when I’m falling
And You’ve told me who I am
I am Yours, I am Yours

Who am I, that the eyes that see my sin
Would look on me with love and watch me rise again
Who am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me

Not because of who I am
But because of what You’ve done
Not because of what I’ve done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapor in the wind
Still You hear me when I’m calling
Lord, You catch me when I’m falling
And You’ve told me who I am
I am Yours

Not because of who I am
But because of what You’ve done
Not because of what I’ve done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapor in the wind
Still You hear me when I’m calling
Lord, You catch me when I’m falling
And You’ve told me who I am
I am Yours

I am Yours
Whom shall I fear
Whom shall I fear
‘Cause I am Yours
I am Yours

Posted (jooosh) in All Posts on April-26-2008

Ella and I let mom take a break for a few hours while we worked on our feeding / napping / playing skills.

The pictures above were taken during her afternoon feeding session. It seemed that the Bun was getting a bit hot so we vented the outfit a bit to let her cool off. She does run warm (like her dad), and it takes her no time at all to get sweaty if I’m holding her. In fact, when she falls asleep on my arm she leave a big sweat print once I put her down. She does this when Tina holds her too so it’s not just me. No…really…it’s not just me =).

Looking forward to another relaxing day with the Bun. I’m so glad it’s only Saturday.

Posted (Tina) in All Posts on April-25-2008

Ella’s PT appointment went well this morning. We are challenging her by using a towel rolled underneath her armpits as she is laying on her tummy. This forces her to use more of her upper body to lift her head. That is part of our homework until we have physical therapy on Monday.

We were not able to switch physical therapists yet, which means that we have to drive to the session on Monday. Bummer! I had mentally accepted that we would not have to drive to the appointments any longer. But, the PT is very good and worth the drive! Hopefully, we can switch to the PT that lives in our apartment community at some point next week.

Ella’s OT session went well too. Although she has not taken an entire bottle in a few days, each feeding session today from the bottle ranged from 20-45ccs. Now that Ella is enjoying her feeding sessions, we want to not only continue to have her use the bottle and eat baby food, but we want to slowly improve her positioning. Currently, she lays down on her side to eat. This afternoon, we implemented a rolled towel that places her at about a 30 degree angle. The long term goal is to eventually have her sitting up.

Finally, Bugs Bunny would be proud: Ella likes carrots. We introduced them and the small jar is gone after today. Our menu so far consists of pears, apples, mangos, sweet potatoes and carrots. Way to go Ella!

Posted (Tina) in All Posts on April-24-2008

Her PT session this morning went well. Since tummy time was successful yesterday, we started in that position again.

Ella tolerated the therapist stretching her and rolling her to each side. Then throughout the day, we had tummy time on the Boppy. Once again, she decided that it was pretty comfy.

We tried to switch durable medical equipment companies today, and they showed up, but they did not have 90% of what we needed for Ella. It was a little frustrating since I spent time on the phone with the branch manager reviewing our needs in detail. I took the time to do this in advance because I have noticed how there is little support for infants and pediatric patients, in general, versus adult patients. Here is an example: a standard oxygen compressor has a regulator on it that delivers oxygen in increments of .5, 1, 1.5, 2, 2.5, 3, 3.5, 4, 4.5, 5 liters. However, the pediatric oxygen compressor we have been using has a regulator on it that delivers oxygen in increments of .1, .2, .3, .4, .5, .6, .7, .8, .9, 1 liter. Her oxygen need started at .5 and is now at .4. A pediatric regulator on the compressor gives us the ability to control the oxygen in smaller increments. We don’t ever use anything above 1 liter. If we were requiring more than that amount, Ella would be sick and likely in the hospital.

Needless to say, the switch was not successful. I’m just thankful that we pushed to do the switch this month. If we had waited right up until the few days before we moved, it would have been stressful. At least we have more time to get things organized before we move back, so we don’t end up having to ship a bunch of equipment.

We have another early PT appointment in the morning. Hopefully, it will go well again. I think the PT is going to stick with tummy time, since Ella is responding to it.

I can’t believe that the Bun is 9 months old today…wow. And there are only 37 days until we walk in our front door in Colorado.

Posted (jooosh) in All Posts on April-23-2008

What a good day for the Bun.

Her heart rate has come back down a bit over the last 48 hours, now hovering closer to 120bpm while she’s sleeping. Not that it was a huge deal, but I’m glad to see the numbers going that direction.

Ella got to try another fruit today: mangos. She did OK the first time she tried them. Tina gave them a taste too and decided they should be sweetened up with a little sugar. Ella agreed. The next mango session Ella kept opening her mouth for more. Just a spoonful of sugar helps the mangos go down.

In the afternoon, Tina took the Bun for a walk, and when they returned we had a little family photo session.

Ella’s morning PT went well with minimal fussiness. Tina and the therapist were able to coax Ella into some good tummy time, and Tina carried that trend throughout the day. In fact, Ella was comfortable enough on her tummy tonight that she fell asleep on her boppy.

We also have a PT session scheduled at the apartment first thing tomorrow morning.

We continue to count down the days before heading back to Colorado. Praise God for how far our girl has come, and we know that He will continue to be with her every step of the way.

Thank you Lord for Ella Renae.

Posted (Tina) in All Posts on April-22-2008

Today was a busy day. Phew, I’m wiped. But I know I can’t leave you hanging!

Ella was in a great mood today, not fussy at all. She didn’t have stranger anxiety either. I think she enjoyed the change of scenery that getting out of the apartment offered. Overall, she seemed more like herself, which I haven’t seen in about a week. This usually means that she is feeling better.

The day started with an 11am appointment for an echocardiogram. First, the nurses came in to do an EKG. It was a bummer that I forgot the camera, because this was an amazing picture of Ella. They placed 15 stickers all over her chest and abdomen area and attached clips that are attached to a machine.

Electrical waves cause the heart muscle to pump. These waves pass through the body and can be measured at electrodes (electrical contacts) attached to the skin. Electrodes on different sides of the heart measure the activity of different parts of the heart muscle. An EKG displays the voltage between pairs of these electrodes, and the muscle activity that they measure, from different directions. This display indicates the overall rhythm of the heart, and weaknesses in different parts of the heart muscle. It is the best way to measure and diagnose abnormal rhythms of the heart, particularly abnormal rhythms caused by damage to the conductive tissue that carries electrical signals, or abnormal rhythms caused by levels of salts, such as potassium, that are too high or low. -Wikipedia

Once the EKG was complete, we waited and waited and waited. The technician for the echo did not come in to get us until 1:10pm. So, about a 2 hour wait. For about 30 minutes of that time, Ella fell fast asleep in my arms. This was shortly after her 12pm feed, so her belly was nice and full. This is the only time she slept during our outing…I was surprised.

The echocardiogram technician looked familiar. After talking with him, we realized that he did an echo on Ella back in early February when she was on the pediatric floor at Shands. He remembered her and told me that the pressure in her lungs looked better to him.

Around 1:30pm (the same time as my scheduled appointment with Dr. Kays), the cardiologist came in to discuss the results of the echo. His name is Dr. Fricker (yes, that is his name). Overall, he explained that Ella’s prognosis is good. He took in a lot of history and went to the computer to read many of her past echo results as well as look at the most recent chest x-ray. There was nothing alarming related to her heart and her test today did not show severe pulmonary hypertension. He noted that her prescription of sildenafil is low for an infant her age, and so the recommended strategy should be to let her outgrow the prescription rather than decrease or change it. He is writing a final report and will place some of her echocardiograms on a CD, so I can take them to Denver.

Once we were done there, we went across the clinic to the other side to see Dr. Kays. We were about 20 minutes past our scheduled time, so we were not placed in a room till around 2pm. At this point, my feet were killing me (wore the wrong shoes) and a toilet and food sounded fabulous. I prepared well for Ella and had everything and more that she might need, but I was hungry and needed a bathroom break. Ahh, the joys of motherhood as I pushed past my own needs.

I should mention that they took Ella’s vital signs at 11am when we arrived at the cardiology clinic. So here I was waiting to use the same scale, and it didn’t happen! She weighed in on the cardiology side of the clinic at 12 lbs, 13 ounces and 25.5 inches. She was 11 lbs, 14 ounces and 24 inches at her last appointment with Dr. Kays one month ago. Progress in the right direction!

While we were in our waiting for Dr. Kays, another CDH family that has been following the blog met us. The Bennetts have a son named John who is 5 years old and was saved by Dr. Kays. It was such a trip to have John lift his shirt and see his CDH scar and g-tube; their scars were identical. Once again, I was so bummed that I did not have my camera. Debbie Bennett took out her camera and snapped a few shots, one specifically of Ella and John. If we can get our hands on the photos, maybe we can post a picture. (As a side note, please pray for John. He is actually going to require another surgery from Dr. Kays for repair on his diaphragm patch in the upcoming days).

Seeing Dr. Kays went well. He was happy with Ella’s weight gain and overall progress. When we talked about going home and coming next month for our last appointment (the last visit for the near future), he mentioned that he thought we should have cake or something! Just as we look at Ella and realize what a miracle she is, Dr. Kays remembers the challenge of saving her life and getting her to this point. Ella smiled at him a lot and he gave her a couple of kisses here and there! Dr. Kays loves the Bun too!

In order to have her gain more weight and because she is getting bigger, he increased her formula intake to 600ccs per day (she was at 550ccs). Between this increase plus baby food she is ingesting, she should hopefully gain more weight on her next appointment.

Ella’s g-tube has been leaking recently, so they decided to replace it. Also, she had granulation tissue they needed to burn off again. It was less this time, so keeping it clean and dry as much as possible is the only key to reducing the frequency for her.

Our last appointment with Dr. Kays is Tuesday, May 13th, 2008. We need to visit radiology first and get a chest xray before the appointment. I’m hoping that she will impress all of us with the best chest xray to date.

We finally arrived home at 4:15pm and by 5:40pm, the physical therapist showed up for her short session with Ella. Again, it is so nice of her to offer to stop by and make the extra effort because it is best for Ella.

The session went well. Again, Ella was still in a great mood. I was shocked considering that it was nearly 6pm and she hardly slept today. The PT did not handle her as much directly, but we worked together and gave her time in her chair and then tried tummy time with our Boppy. It lasted for about 2 minutes, but I got Ella to smile a few times. It was great to see her do this since we have not been able to have tummy time. Each time I would try, she would get very upset. The PT showed me a few tips since Ella is weak right now, mostly with positioning using other pillows and blankets, and they worked! I think we were so excited that she was doing well, that we waited too long to rescue her once she started fussing. So, she had a meltdown. Oh well, I think that we were both excited that we even had 2 minutes with her on her tummy!

Once she started breathing from her meltdown, Ella fell asleep instantly. I simply laid her down in the crib and she was gone! We tried waking her up at 8pm. We tried everything…making noises, faces, using musical toys she loves, kissing on her, asking her if she wanted to watch American Idol (j/k) and nothing worked. She was exhausted from the day. So we’re hoping that she sleeps through the entire night. Although last night, she did the same thing. She went to bed at 6pm and although she woke up a handful of times, did not truly wake up until 6am in the morning.

Another piece of great news: Claudia’s colleague at the University decided to take on Ella for the next 4-5 weeks until we leave. So, Claudia is going to finish out this week of physical therapy with Ella and then hand her off. The other PT’s name is Barbara. Barbara lives in the same apartment community and can come to our apartment each day during the week. That is going to be great for Ella. Plus, I’m excited that we do not have to drive. Tomorrow is our last appointment of driving to physical therapy. Thank God!

Okay, that was a lot of detail for a busy day. I’m wiped out and running away to get some beauty sleep before I blog any more thoughts…

Posted (Tina) in All Posts on April-21-2008

The highlight today was seeing Kelsey and Ben Rupert. Kelsey is the mother of Ben, a CDH baby that was saved by Dr. Kays.

Last June 1st when we visited the NICU at Shands for the first time, Ben was one of the memorable CDH babies that we met. He had just been extubated and I clearly remember him smiling up at Dr. Kays. It melted my heart and proved to me that Dr. Kays must spend a lot of time in the NICU for this baby to know him.

Ben had his 1 year old birthday and looks fantastic! Kelsey has been doing lots of OT and PT every week with Ben since last September (8 months). She had 2 goals that she was striving for him to meet by his first birthday and he did it! He can sit up on his own and eat 1/2 of a jar of baby food! His shirt said it all: Stud Muffin. It was great to see Ben and the progress that he has made over this past year. It helps give perspective on how much more work Ella needs for her age and yet at the same time, what miracles and gifts these children are to us!

Unfortunately, Ella was fussy the entire time. She is just in that stage where she does not want to be around other people. So even when a stranger is near, it is enough to make her upset.

From there, we went to the physical therapy session. Once again, Ella cried the entire session. Only a few minutes of work was completed until the therapist handed her off to me. Since Ella was turning blue, she had no choice.

It is so hard to see your baby get so upset. I have to increase her oxygen and it takes me a long time to get her to calm down and breathe again. She looks at me and I feel like she is wondering why I am not rescuing her. And yet, she needs to do this physical work in order to get stronger. It is so tough.

As I was calming her down, a moment came that I was not expecting. Although our days in Gainesville are numbered, the PT went out on a limb. Claudia asked me what else we have in our schedule this week. I told her about our various appointments.

In a nutshell, she offered to come to our house 3 additional times this week, on top of Ella’s 2 regularly scheduled visits in her office! She was honest and said that Ella is simply not going to make progress by meeting 2x per week, at this stage. Ella has to get used to others handling her and that isn’t going to happen by only having PT sessions 2x per week.

Wow – – I was pleasantly surprised. This is someone who has been doing pediatric physical therapy for 26+ years and truly cares about her patients. Also, Claudia mentioned that she had a thought the other day when she dropped off the chair for Ella at our apartment. She has a colleague that is on faculty at the University of Florida with her. Apparently, she has about the same number of years in experience. The amazing part: this PT lives in our apartment community! So she told me that she would talk to her and see if she would be willing to take Ella on as a patient over the next 4-5 weeks while we are still in Gainesville. To make it seamless with insurance, she even offered to bill it through her office!

Claudia is certainly not trying to hand off Ella to someone else. However, if it works out, it would be amazing because Ella could get PT almost daily and we wouldn’t have to drive anywhere. Claudia knows that is best for Ella and us! If nothing else, she stated that Ella would get more used to being handled so that we would not have to deal with that issue once we are back in Denver. I just hope and pray that it works out.

Tomorrow is a busy day. An echocardiogram at 11am, meeting another CDH family in-between, Dr. Kays at 1:30pm, and physical therapy at 5pm. I’ve got to prepare all of the food and meds ahead of time since I will be gone most of the day. I’m hoping for lots of beauty sleep tonight.

Psalm 16:8-9
I have set the LORD always before me.
Because he is at my right hand,
I will not be shaken.

Therefore my heart is glad and my tongue rejoices;
my body also will rest secure.