Tina and our sweet neighbor went out for some girl time so I chilled out with the Bun. Obviously her hairstyle and outfit represent who’s taking care of her =).

Overall it was a pretty mellow day, but Ella did have one hairy meltdown moment where she desaturated again very quickly. She didn’t fully pass out, but I think she gets scared which makes it worse. It’s not fun to experience these and I hope we get some more direction next week. Ella’s pulmonologist is out of town so we’re waiting to discuss some of the details with him.

Praying we find a solid solution in the coming days that doesn’t require any invasive procedures.

I can’t figure out why, but Ella does not want to do physical therapy any more. Each time we go to attempt it, she melts down. She is clearly telling me that she does not want to do this activity right now. But, I just can’t figure out why the sudden change. There are a few factors that might be causing this change in behavior.

First, she is not at her baseline medically. Last week was the height of multiple meltdown moments each day. And this week is much better, although she is still not where she should be. So, maybe that is playing a part.

Also, we changed our tactics with occupational therapy because we were not getting anywhere with trying to make Ella eat food. So now, the sessions are much more productive, but Ella is also having to “work” which is more taxing on her. The OT sessions are the first therapy sessions of the day and Ella does seem to tolerate them the best. Maybe by the time PT comes around 1-1.5 hours later, she is too tired and simply doesn’t want to engage in the activity.

Finally, how much can teething be playing a part? You can see a few more teeth trying their best to resurface recently. Maybe by that time in the day, she has been playing with them so much that they are throbbing and she just doesn’t want to work any more?

Even though she clearly lets me know that she does not want to do PT, she will calm down if I place her to lay down with her binky.

I know it is not a personal thing with the PT – they love each other. And when the PT was cuddling Ella today, she couldn’t have been happier. To put it in perspective, Ella hasn’t been in her exer-saucer either. Every time that I have tried in the past few days, she melts down. So things that are usually pleasurable for her are not right now. And since I want to fix it for her and make it better, it can be frustrating.

She still enjoys going for a ride. We ran a quick errand this morning and she was all smiles.

The hospital has not called back yet. Maybe tomorrow will be the magic day. In the meantime, I’m just trying to love on the Bun and get her to tell me what is up.

Today marks the beginning of our 100th week since Ella was born. She was born on a Tuesday, so when we started taking pictures of her and uploading them onto our computers and the blog, her birthday started Week 1. Tonight, we went to upload pictures and it is the start of Week 100. That is crazy!

It is also crazy to think that it is Day 693. We have so many posts and pictures of this child. I hope that this blog is a great gift to Ella some day.

Ella slept solid but woke up a bit earlier than normal. We took a walk this morning and enjoyed the beautiful Colorado weather. She was still sleepy, but remained quiet as we strolled the neighborhood. Then, we had fun reading her book together.

In the late morning, her session with the occupational therapist went well. The Bun was not as tolerant of the exercises, but we were still able to accomplish quite a bit.

She took a nap in between sessions and started physical therapy early in the afternoon. For the first 30 minutes, she was really fussy and became wet with sweat. The PT was very patient and decided to stick it out, to see if Ella would recover. Finally, Ella’s mood improved. It just seemed to take a long time. Ella still didn’t seem like she wanted to do that much work, but at least she stopped crying and fussing. For example, we usually place her laptop computer to her side to see if we can get her to bear weight on her arms to lean over and push the buttons. Instead, she was moving her feet to push the buttons! I’m hoping that tomorrow is better for her and we can get back to challenging her physically while having fun at the same time.

Our new babysitter came over again tonight for more training. Tomorrow, I will shadow her and see if we have left any gaps in her training. Once we are all set, it will be really nice to have someone watching Ella again and giving us a couple of much needed breaks each week.

Today, Ella came close to passing out twice. Although, she is still much improved over last week. Even the babysitter was surprised at what a difference a week has made for Ella. She had a chance to experience how fast she passed out last week and could tell a huge difference. I explained that Ella is not even at her baseline right now; there is still something that is not right.

We did not hear back from the Children’s Hospital today, but that is not surprising. Since her pulmonologist is traveling in Europe, we may not hear for a few more days. We’re trying our best to be patient and watch Ella closely for any subtle changes.

We just want the Bun to be better…she is such a cutie pie. And so flexible…who knew that toes could taste so good?

Ella had 3 therapy appointments today. Before OT started, she was having a great time with her laptop computer. Then, OT went fairly well and that is the only session where I was able to take pictures of her exercising. When PT arrived at 2pm, Ella did not want to work. She cried and melted down. Unfortunately, she did have one of her episodes again today where she briefly passed out. It took a bit longer than last week and the pass out moment was very brief, maybe for 1 second, but she still had it happen.

Speech therapy went pretty well too. The therapist wanted to observe Ella while watching one of her favorite videos, Baby Signing Time. She has been watching this series of videos since she was 6 months old and was released from the NICU in Florida. She absolutely loves them and gets so excited.

The therapist was helping to give me ideas to implement that will help Ella’s communication skills. Here are some examples: Before putting Baby Signing Time DVD in, help Ella gesture “baby signing time” in sign language. This will help to tell her what is coming next and learn how to request it. Stop the DVD during certain times to help increase Ella’s vocabulary. For example, stop when the “bird” is on the screen and help her sign “bird” and/or point to the bird on the screen. When done, have her sign “more” to turn the video back on. With other videos, show Ella the DVD before playing it. Later, she might be able to choose the one that she wants.

We spoke to Dr. Abman’s nurse today and reviewed Ella’s progress since the increase in medicines. There is still some concern that the episodes are occurring. Dr. Abman noted that her latest chest x-ray is consistent with the one in April, but that it is not a clear xray. It does seem like she might have fluid in her lungs. The nurse is going to double-check with cardiology tomorrow to get a full assessment of Ella’s SVC and whether the flow is the same or worse since her procedure on Feb 25, 2009. This way, we can either eliminate the SVC as playing a role or take the steps to investigate it further.

The other idea is that she simply may need more diuretic. Since the SVC procedure, we have not given Bumex, a really strong diuretic (before the procedure, she needed it about every 2 weeks). Then, 4 weeks after the procedure, we eliminated Captopril which helped increase the effectiveness of the diuretic. On top of it, she has gained 6-7 pounds since the SVC procedure, but we did not increase her diuretic. So, although the SVC procedure has given us more wiggle room with her fluid issues, it may not have resolved it completely and now, it has caught up and we are seeing symptoms of the fluid.

Dr. Abman is on his way to Europe to give some medical lectures, so it may be a few days before we get any clear direction on next steps. We’re just hoping that it doesn’t involve anything too invasive.

Tomorrow, Ella just has OT and PT. I’m really hoping that she enjoys her PT session. She has not tolerated the last few and I cannot figure out why. She loves her therapist and usually welcomes the time to play. It’s been strange.

I wanted to share a devotional excerpt that really spoke to me last night. It is from “Streams in the Desert” by LB Cowman, edited by Jim Reimann.

God has made me fruitful in the land of my suffering
-Genesis 41:52

A poet stands by the window watching a summer shower. It is a fierce downpour, beating and pounding the earth. But the poet, in his mind’s eye, sees more than a rain shower falling. He sees a myriad of lovely flowers raining down, soon breaking forth from the freshly watered earth, and filling it with their matchless beauty and fragrance. And so he sings:

It isn’t raining to me – it’s raining daffodils;
In every dripping drop I see wildflowers on the hills.
A cloud of gray engulfs the day and overwhelms the town;
It isn’t raining to me – it’s raining roses down.

Perhaps you are undergoing some trial as God’s child, and you are saying to Him, “O God, it is raining very hard on me tonight, and this test seems beyond my power to endure. Disappointments are pouring in, washing away and utterly defeating my chosen plans. My trembling heart is grieved and is cowering at the intensity of my suffering. Surely the rains of affliction are beating down upon my soul.”

Dear friend, you are completely mistaken. God is not raining rain on you – He is raining blessings. If you will only believe your Father’s Word, you will realize that springing up beneath the pounding rain are spiritual flowers. And they are more beautiful and fragrant than those that ever grew before in your stormless and suffering-free life.

You can see the rain, but can you also see the flowers? You are suffering through these tests, but know that God sees sweet flowers of faith springing up in your life beneath these very trials. You try to escape the pain, yet God sees tender compassion for other sufferers finding birth in your soul. Your heart winces at the pain of heavy grief, but God sees the sorrow deepening and enriching your life.

No, my friend, it is not raining afflictions on you. It is raining tenderness, love, compassion, patience and a thousand other flowers and fruits of the blessed Holy Spirit. And they are bringing to your life spiritual enrichment that all the prosperity and ease of this world could never produce in your innermost being.”

Insomnia hit me last night. Ella woke up around 2:30am and I tried to go back to sleep, but was unsuccessful. So, I was up at 5am when the sun welcomed the day. That is not a frequent occurrence, but made for a nice way to start the day while I drank my coffee.

I had to wake up the Bun extra early this morning, so that I could make it to an early dentist appointment. I figured that we would try it out and if she got too upset, I would need to reschedule. I tried to keep the stroller close to the chair, so I could reach over and yank on her favorite toy to make music and calm her. She fussed a few times and I had to stop to attend to her, but overall, she was really good. This was especially surprising because you could tell that she was really sleepy and she doesn’t tend to tolerate things as well when she is tired. But again, it was something to do outside the house and I think she enjoys almost any kind of field trip.

The dentist did enjoy taking a sneak peek in Ella’s mouth. Of course, she did not actually examine her mouth, but would catch glimpses as Ella smiled and looked up at me from her stroller. The dentist recommended researching to see if any of the medicines that Ella has taken in her short little life have any impact on teeth. She’s had other patients where the medicines taken early in life has ruined the enamel on the adult teeth that emerge. I’ll admit, it was certainly not something I’ve ever thought about before today. Also, she mentioned that usually around 3 years old is when teeth should be examined for the first time. I explained that Ella will likely need sedation due to her oral aversion. She let me know that she has a wonderful pediatric dentist where she can refer us.

I love it when doctors are thinking in the best interest of their patients and not just trying to take on Ella when they are not equipped to, for example, give sedation safely. I would love for Ella to see our dentist in the future, but it is likely that for her first several years, sedation may be a requirement. Then again, who knows…Ella could surprise all of us.

Speaking of the unexpected, I’m surprised that 1ml more of diuretic has made that much of a difference for Ella. I’m so thankful and shocked at the same time. As of last Thursday when the diuretic was increased, she has not passed out. She gets fussy or mad, cries and might turn blue after lots and lots of crying, but not instantly within seconds. It is such a relief to be back to her baseline. And if it this symptom returns in the future, maybe it will be as simple as just weight-adjusting medicines. That is nice instead of major medical interventions!

The dentist and one errand was the highlight of the day. The rest of the day was low-key at our house. Three separate times, a tornado warning came across the TV. Although none were for our exact area, the weather is crazy. I do not ever remember seeing or hearing about tornadoes like this in the Denver area. Supposedly, today was the last day of this madness for now. Toto, I have a feeling we’re not in Kansas anymore.

I’m hoping that Ella sleeps well tonight. She has 3 therapy appointments tomorrow; one at 11:30am, one at 2pm and one at 4:30pm. It is a very full and busy day for her. We will see if she goes for it!

Today we all went out as a family and ran some errands. We’re in the market for patio furniture so most of the time was spent hunting around for things we would like. When we arrived at a location, Tina or I would take turns going in to take a look around while the other stayed in the car with the Bun. We brought her along inside one time though, doing our best to minimize any undue exposure.

At this moment I’m very relieved about the fact that Ella has not passed out since we increased her diuretic. I’m happy about this for two reasons: First, she’s not passing out. Secondly, if the passing out trend were to continue, we would have to pursue other invasive procedures to determine the cause.

We are so thankful for the progress Ella has made, and she has made incredible progress, but it is still difficult. We’re reminded every time we see another “healthy” child running around, often times even younger than Ella. Then, we catch ourselves and His truth comes to mind. Tonight, I had a traditional doxology placed on my heart. This is the final verse of a hymn written in 1674 by Thomas Ken:

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.
Amen.

We continue to trust in our Lord and Savior, knowing that He has a perfect plan for her life. We’re so blessed that He chose us to be her parents.

I purchased tickets to the Denver Luxury Home Tour, which features 27 houses across the Denver metro area, all ranging between $1m – $6m dollars. Originally, my friend and I planned to do this activity together for a few hours over the next few weekends. Since my friend was not able to join me and we wanted to get outside as a family, I talked Josh and Ella into chauffeuring me around to some of the houses.

As usual, Ella enjoyed the ride in the car. The drive took us to the northern part of the metro area. I’ve included a few pictures from one of my favorites. Very rich decor and custom finished touches. Yes, I was drooling!

In the middle of the tour, Ella became cranky and tired. She wanted to sleep, but that meant that the car needed to keep moving. If we even stopped at a traffic light, she started to cry again. So, we even had to continue making right hand turns into new neighborhoods just to keep the car moving and avoid a meltdown.

Speaking of meltdowns, we are very thankful. After 2 days, it seems that the increased amount of diuretic is making the difference for her. She has gotten mad and cried hard many times over the past two days and yet, no turning blue instantly and passing out. Also, her saturation was amazing last night when she was sleeping. We were able to turn down her oxygen again to 500ccs and her numbers still looked good. So we are not sure if it is a combination of the increased sildenafil plus the increased diuretic that is making the difference, but she seems better. We’ll see how the next couple of days turn out.

Once we were done with the luxury home tour, we found ourselves down the street from a good friend that had never met Ella. So, I called and she happened to be home. The last time I saw her in-person was 2 years ago at my baby shower! We gave each other good hugs and she enjoyed meeting Ella in-person. Although I was enjoying my brief visit with her so much that I forgot to take a picture…oops!

But of course, I did not forget to take pictures of the Bun enjoying the luxury tour!

Ella’s day was better.

She had one meltdown moment that lasted 45 minutes. I think her belly was giving her some grief, so after trying everything including venting via her g-tube, I gave her some medicine. Shortly thereafter, she calmed down. Although it is not fun to have her worked up for that long while she is screaming in my ear, sweating profusely and requiring huge amounts of O2, the good news is that she did not pass out. I consider that a positive sign.

This morning, I increased her diuretic, Aldactazide, per the doctor’s orders. This increase will help with any fluid issues, if she is having any. Knowing Ella, that would not be out of the question. I can only hope the increase in medicine made the difference and that is why the meltdown today was more “normal” for Ella. The next few days will be telling.

We were thinking of going to the mountains the weekend after this one, but based on Ella’s latest condition, we have placed that idea on hold. Unless she really does a tremendous turn-around, the fresh mountain air at high altitude is probably not a good idea. It would just make her little body work that much harder.

Glad that the weekend is here, so we can enjoy some family time.

Psalm 19:1-2 (NLT)
The heavens proclaim the glory of God.
The skies display his craftsmanship.
Day after day they continue to speak;
night after night they make him known.

Ella’s day was filled with meltdowns.

I’m not sure that I can describe these meltdowns accurately. It simply starts with Ella just being mad about something, which is not new, but when she starts to cry hard and hold her breath, she desaturates so fast. Literally, her face will look blue in a matter of seconds. Ella is not doing anything different or new, but somehow, her little body is responding differently than it has before.

The worse part in all of this, the doctors don’t know why. So far, her sildenafil was increased over the past 2 days (the pulmonary hypertension medicine), but we have not noticed a difference.

Just today, there were 3 instances where she desaturated and turned blue quickly, but between blowing on her face and an increase in oxygen, we were able to avoid passing out. However 2 other times today, she did pass out on me. And the whole thing was fast. One minute she was smiling, the next minute she got mad and started to cry and within seconds was turning blue and passing out.

It is such a scary and helpless feeling as a mother…to be holding your child and praying that nothing worse will come of the episode. It’s fearful because it is happening every day. I just wish we knew what was going on. I think Ella gets scared too because she can’t breathe.

As directed, I’m going to increase her diuretic tomorrow morning and follow that for a few days. Please pray that this medicine will make a difference for her. If not, we will have more invasive procedures ahead of us in the coming days and weeks.

And all of this, just when we thought that the Bun might be on an upward track. Let me clarify: she has always been in forward motion. But it is 10 steps forward and 8 steps back. So, there is incremental progress but it just always feels like she never gets a true break on the medical front.

As always, trusting in Him who knit her together and has a specific plan for her life. But on emotional days like today, pleading for mercy and grace for our sweet baby girl.

1 Kings 8:28 (NLT)
Nevertheless, listen to my prayer and my plea, O Lord my God. Hear the cry and the prayer that your servant is making to you today.