Ella’s day started with bubbles in the bath. She usually cries right when I place her in the tub and then it varies. Before, she would always have a meltdown the entire time. That is getting less and less frequent. Now, it just depends on her mood, how tired she is and how she is feeling physically. This morning, I got a smile or two and some kicking which made big splashes in the tub!

Ella had OT and PT today and did fairly well during both sessions. Although, she did seem a bit more tired and was not as tolerant as I have seen her on other days. The OT is going on vacation starting this evening, so tomorrow will be a more mellow day with just PT in the afternoon.

One positive thing that has happened this week. We found a part-time babysitter that wants to watch Ella for us a couple of nights per week. The best part: she has been an Ella follower via the blog for months! And her motivation is just to watch her because she wants to spend time with her and love on her! This is a huge blessing for us. We know that we need to have breaks individually as well as date nights: this person will provide this for us! We’re going to start our first training session tomorrow night. Pray that everything goes well! We’re excited.

Another development: I love taking care of my beautiful daughter and didn’t want to give up that part of my life, so I have opted to stay home full time with Ella for now. We explored the nanny scene and did not get the indication that we are supposed to go that direction. Instead, this part-time caregiver came into play which will give much needed breaks each week. Also, I’ve just joined Entertaining at Home as an Independent Consultant. I really feel that this is the opportunity that is going to allow me the flexibility to spend time with my family while being able to start my own business. The extra bonus is that it forces me to get out of my shell and meet wonderful people at parties!

The thought of owning my own business and taking control of my life appealed to me, but it always seem overwhelming. When I learned about this opportunity and then looked at all the wonderful products in the catalog, I wanted them all! It just seemed like there was something for everyone and everything someone would need to entertain, from high quality kitchen tools to beautiful decorative items that are functional and fun to display.

When I shared the catalog with my neighbor, she was excited to book a party because it allows her to get so many items for free and at half-price. Her immediate commitment affirmed that I needed to take this step! And now, I just need to find more friends to host parties. I’m looking forward to getting out of the house and socializing at parties this summer!

I’m not sure why, but Ella was making this funny face all day! I wonder what is prompting that look…we’ll ponder that as we go to sleep tonight.

Wow, it was a long day at the hospital. We left at 9:15am and returned at 5pm.

First, we visited cardiology for the echocardiogram. When they were doing initial stats, we learned that Ella got a bit taller. She is now 32″ long. When discussing the upcoming echo, I warned the nurse that we should order the sedation because there was a good chance that Ella might need it.

When the nurse left the room, I could smell that I needed to change Ella’s diaper. I went to change her diaper, got out a new one, changed her needing to using several wipes and as soon as I went to fasten the diaper, Ella decided to go a 2nd time. It was messy and smelly, but thankfully it was in an exam room and all of this happened before the echo started.

We switched rooms and met the echo technician. She seemed very experienced and started out by placing the stickers on Ella’s chest. As soon as that process started, Ella melted down. As I have been describing on the blog, she held her breath and it only took about 5-7 seconds for her to desaturate down to 53! I had been describing this to the nursing staff, so I was glad to have an eyewitness. I blew on Ella’s face to get her to take a breath and we avoided her passing out. I think we also avoided it because I cranked her oxygen to 4 liters! I had to place her oxygen that high to get her to come back to a reasonable place and then weaned down to 2 liters and left it there for the procedure.

I wanted to try the echo without sedation, but had a suspicion that we might need it. Our echo tech suggested that I climb on the table next to Ella. I explained that would not likely soothe Ella, but asked if I could hold her. She said that she could make that work. I have never seen an echo done while Ella was sitting up, so I knew that this technician had lots of experience for which I was thankful.

Ella fussed a few times, but nothing major. Then in the middle of the echo, she decided that the tech wasn’t going to hurt her and started smiling and watching the screen with all her heart information. I was so surprised – Ella did great. I know it is because I was holding her – but still – I thought she would let me know that this was not her decision to have this procedure done. So, the great news is that we did not have to use any sedation. And I never knew that an echo could be performed with her sitting up, so I will request that in the future.

Once we left cardiology, we went down to the cafeteria to grab a bite to eat. We met a friend that works at the hospital and has watched Ella on the blog over the past several months. It was nice to have some company while we ate lunch. Then, it was Ella’s turn to eat lunch, so out came the syringe! Once she was full, she got cranky and finally dozed off to sleep. After a 30 minute rest, we had to go back upstairs to meet with the pulmonologist.

While she was in the office, Ella was on 1 liter of oxygen. They hooked up the pulse oximeter to watch while we discussed her latest condition. Her saturation fluctuated, but mostly stayed between 91-93. Dr. Abman noted that this was a higher O2 requirement than last time.

When we described the meltdowns that are result in her passing out, his first thought is that her pulmonary hypertension might have gotten worse. But, he reviewed the echo results and stated that the pulmonary hypertension is not worse; it’s about the same as the last echo. However, I did remind him that she spent nearly 6 months in the NICU before they determined that she had pulmonary hypertension. None of the echocardiograms showed the pulmonary hypertension, but she still had it. Even last October, they thought she maybe didn’t have it and discontinued the medicine for that condition, and then Ella ended up in the PICU. So, although echocardiograms often show that Ella’s pulmonary hypertension is being managed, she still has it. He agreed that echocardiograms cannot be the only measure used for diagnosing pulmonary hypertension in Ella.

I shared that we think it might be that she needs an increase in her pulmonary hypertension medicine, Sildenafil. The last time that Ella showed signs like this was back in the NICU before she started taking Sildenafil and last fall when they temporarily ceased giving her Sildenafil. Dr. Abman wasn’t planning to recommend an increase in her medicine, but since she is already on the medication and he trusts our instincts, he wrote a new prescription to weight-adjust the dosage.

He hasn’t ruled out that it is not a fluid issue, so he also ordered a chest xray. He wants to compare it to the last one on 4/25/09, to see if it looks the same or worse. He thinks that the diuretic should be weight-adjusted too, to make sure that it is not a fluid issue.

Once we were done with the appointment, we went downstairs to radiology. I figured we had already spent the whole day at the hospital, so why not get the chest xray now and spend even more time? Ella cried a lot during the xray, but overall, it wasn’t too bad.

Now that we are home, we are going to increase the Sildenafil for a few days to see if Ella is still having extreme meltdowns and/or is still requiring the higher amount of oxygen. If that doesn’t improve things, then we will increase her diuretic a few days from now.

We are supposed to have a phone conversation with her pulmonologist in one week from today. If both of those medicines don’t seem to help within the next week, we may have to go back to the hospital for further diagnosis. The next steps would either be another echo where they take away Ella’s oxygen momentarily during the echo to try and replicate her episodes and document what happens with her heart and lungs. Or they may decide to put Ella in the heart cath lab again under Dr. Fagan (the doctor who placed her stents), so he can accurately measure the the pulmonary pressure and assess if fluid is playing a part.

We’re hoping that it might just be the Sildenafil medicine that needed to be weight-adjusted. We actually don’t think it is fluid retention and would like to see her diuretic discontinued. So, the next week will be very telling.

Please say a prayer for the Bun…we’d love to know that just a simple increase in medicine would put her back in a place of comfort, decrease her O2 requirement and give her some more room to breathe when she gets upset without passing out.

Luke 1:50 (NIV)
His mercy extends to those who fear him,
from generation to generation.

Today was exciting because we had our first speech therapy appointment.

The therapist and I talked mostly about strategies and small ideas to work on with Ella. With speech therapy, we let Ella lead the show. If she doesn’t like something, the speech therapist takes the opportunity to teach Ella how to tell us that she doesn’t want it. It is all centered around Ella’s motivation and what she wants and getting her to express those likes and dislikes. Now that I understand more about the approach, I don’t think Ella is going to mind speech therapy at all…since she gets to call the shots! Since Ella doesn’t know the speech therapist yet, I had to hold Ella during the session, so I was not able to snap any pictures. But we should have some in the upcoming weeks.

Since we have to go to the doctor tomorrow, we also had OT this afternoon. This went well too. We didn’t have any fussing from Ella. She was very tolerant of the various activities and exercises from the OT.

And we are so excited that she is using other objects in her mouth for teething. We’ve always tried to introduce them but she has never been willing to take anything else. So today included her toes but also a regular teething toy! Yeah!

We’re gearing up for our big day at the hospital tomorrow. Ella will likely have to get up earlier than normal so we can show up on time. We hope that we get the answers that we are looking for!

We had quite the storm system move through the Front Range today. Five tornados total for the Denver metro area with one touching down only 3 miles west of us. Tina was out enjoying some girl time with our neighbor, and was no where near the action (thank God).

I was home taking care of the Bun when I noticed the very dark clouds just north of us. The wind had started picking up too so I went online to check weather. There was a tornado watch for our area and Doppler radar showed the southern edge of the system skirting by our house.

Within a few minutes, hail started to fall, and I prepared to head down to the basement with Ella. I moved her away from the windows and watched the storm intensify. Hail progressed from pea to almost golf ball size. It was pretty intense for a bit, but then the storm started to subside, and the hail turned to rain. The whole episode lasted about 30 minutes. The pictures at the top of the post show the view out our window and the the size of the hail I picked up after the storm.

I turned on the news and saw that the mall down the street from us had sustained some damage from the tornado pictured above. There was a condo across from the Lowe’s Hardware Store that had its windows blown out and a trailer thrown onto their lawn from across the street. I found some pictures of the trailer and hail on a Flickr account.

Praising our Lord that we’re all safe and sound tonight.

Tina came home this evening from her outing and we snapped these cute pics of her and the Bun. Looking forward to Ella’s Dr. appointments on Tuesday.

Overall Ella’s doing pretty good, but the speed at which she can desaturate when she’s melting down is a bit concerning. It doesn’t happen every time, but when it does, she will pass out within 10 to 20 seconds from the start of the episode. The speed and frequency of these episodes have increased which is why we’re a bit anxious for her to see her Cardiologist and Pulmonologist. She’s scheduled for an Echocardiogram which will probably require some sedation this time so they can perform a proper evaluation.

We appreciate the continued prayer for Ella as well as wisdom and guidance for our next steps in life.

We took Ella to the eye doctor for an annual exam this morning. Based on the tests they can conduct, her eyes checked out. It’s good to know that those pretty blue eyes are working well so far!

Since we were already out and the weather was nice, we fed Ella. Then, we took her for a drive and ate lunch in the car while she caught some zzzzzssss.

Once we got home, Ella had to get her time in with Daddy. She ended the day with placing her foot in her mouth! Again, we’re just happy that she is continuing to explore and put more things in her mouth!

It was a relaxing day with Ella.

It’s hard to see, but she has a small bruise under her right eye. The other night, she was going crazy in her exer-saucer and seemed to be having a great time. All of a sudden, she started crying hard. I wasn’t sure what happened at the time, but then the bruise showed up. Poor Bun!











We’re excited for her doctor appointments on Tuesday. She has not been saturating great. When she gets upset and holds her breath, she is turning blue quickly. Also, it also seems like she is sweating more. She used to do this a lot when she was much younger, especially in the NICU days and shortly thereafter.

We feel like this is something related to her SVC procedure. Maybe the stents are clotting and blocking the flow in/out of her SVC. Dr. Fagan said this was a likely possibility and that the change would probably be subtle. If it isn’t her SVC, something is going on.

It is hard for all of you to tell because I just post the happy pictures. But she is having lots of meltdown moments each day and doesn’t seem to be quite as stable. Please pray for Ella to get stronger and for us to be able to get direction when we visit the doctor on Tuesday.

We’re still seeking the Lord for the next best steps in our lives and looking forward to the weekend for relaxation.

Psalm 119:15 (NIV)
I meditate on your precepts
and consider your ways.

Ella woke up earlier than expected. It required me to grab my coffee and hope for energy as my day started. This meant that we did things a bit out of order and her schedule was off.

The OT session went well although she did not seem as tolerant of her various exercises; she was easily irritated.

When it came time for PT, the two photos below show all that happened during the first 15 minutes of the session. So, the therapist called it a day noting that the Bun was just too tired. This is most likely because Ella did not take a nap in between her therapy sessions and was simply wiped out.

Finally after fighting it off for hours, Ella decided to take a nap late this afternoon. This nap should leave her better equipped for Dad this evening, as Mom is going to the neighborhood Bunco gathering!

Psalm 52:9 (NIV)
I will praise you forever for what you have done;
in your name I will hope, for your name is good.

There is not much to report today, just lots of photos of the Bun enjoying her two therapy sessions and doing her various exercises.

The OT tried a strawberry lollipop (kept it moist with water), and placed it on Ella’s lips. Then, the OT tried to convince Ella to lick her lips so she could taste the flavor. All of this while distracting with her favorite toys!

Ella tolerated her feet in a tub of rice. Quite the new spa pedicure treatment for our princess!

Once we finished OT, the princess took a nap before her physical therapy session.

Today, the PT tried using a rainbow upside down to get Ella to try a new activity with balance and weight bearing. Ella did great – she did not fuss one time!

As a new twist, we started this morning in the bath. In order for this to work, I make sure that I have at least one cup of java in my system. The experience can go good or bad. I need the coffee to make sure I can be alert and respond appropriately.

Once I coax Ella into the idea that it is time to start the day and she is smiling at me, I introduce her to the bubbles. Today’s bath was good, better than the one the other morning. Reflecting back, I think it might be the best time. She has had the most sleep and is more tolerant of something she doesn’t think is “that great”. Of course, I’m hoping that bubbles become a great treat for her, just like they can be for me.

The OT session today warmed up with feathers. Then, we graduated to pinto beans and rice. Ella let the OT work with her for 48 minutes non-stop. The OT was really pleased with how much Ella tolerated her touching her face, cheeks and lips. Also, Ella did pretty well with the z-vibe on the vibrate mode. All of this tactile stimulation that will gradually help Ella to eat someday.

Once Ella had some beauty sleep, it was time for physical therapy. Along with tummy time and the more recent weight-bearing exercises, they tried rolling over across the carpet today. Back and forth, back and forth…all in an effort to reinforce the moves necessary for Ella to do this herself from her belly to back.

Ella’s weight actually decreased a bit this morning. She is maintaining small fluctuations around 11 kilos (24 pounds). I just know that the volume of food needs to go up, but we need to be patient! A week from today, we will be heading to the Children’s Hospital and getting a better idea concerning next steps.

On a personal note, this passage really stood out to me today, especially as I am exploring next steps for myself:

Romans 12:6-8 (NLT)
In his grace, God has given us different gifts for doing certain things well. So if God has given you the ability to prophesy, speak out with as much faith as God has given you. If your gift is serving others, serve them well. If you are a teacher, teach well. If your gift is to encourage others, be encouraging. If it is giving, give generously. If God has given you leadership ability, take the responsibility seriously. And if you have a gift for showing kindness to others, do it gladly.

One gift that Ella has is that amazing smile. It continues to melt my heart each day.

Thanks for all the thoughts and prayers as we continue this journey with our miracle baby girl.

Ella has done this a handful of times and I have never caught it on camera, but I did today! And heck, it looks a bit strange but anytime Ella wants to explore and put something in her mouth, it is a good thing. It will get more interesting in the future when she can place things in her mouth that are not safe. For now, we are just enjoying the baby steps.

Today was mellow although tomorrow Ella has a full day with occupational therapy and physical therapy. We wanted to get outside today but it was chilly and rainy. Bummer!

We’ve started to screen candidates to help take care of Ella, although we are just exploring our options to see who is available and try and determine what that scenario might look like. We have not made any decisions; just starting to research.

Pray that the Lord will make our choices evident and that He will provide wisdom as we seek to hear His voice.

Proverbs 24:13-14 (NLT)
My child, eat honey, for it is good,
and the honeycomb is sweet to the taste.
In the same way, wisdom is sweet to your soul.
If you find it, you will have a bright future,
and your hopes will not be cut short.