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…

Gloria & Red Jacobsen on April 22nd, 2008 at 10:33 pm #

What a darling picture of the Bun! Too cute! So wonderful, all her tests and vists reults,came out goods. Praise God!!

Lesli on April 23rd, 2008 at 2:38 am #

Oh, she’s precious! What a busy day you had! Glad to see that everything is moving in the right direction for the trip to Colorado. We love you and are praying for you. The Richards

Matt, Abby, Austin & Caed on April 23rd, 2008 at 5:04 am #

Wow…what a busy day! It sounds like Ella did great though. We continue to pray for you three every day and ask for God’s continued blessings for you.

Steve and Joan Odell on April 23rd, 2008 at 6:06 am #

You go Ella, girl – what a champ. Obviously she is feeling good and fine with what is happening around her or nothing would have gone well. We are soooo happy for her and the two of you. Prayers – Steve and Joan

Joel Snyder on April 23rd, 2008 at 6:19 am #

Ella, What a trooper you are getting to be these days. I know you are headed in the right direction when you get your Mom tired. WOW those results from your EKG sound good. I am excited that you will be getting PT for the rest of the stay in Florida. I am waiting for you to come home along with Taco and Manny. Have a good day and I will check on you later. Love,Grandpa!!!!!!!!!!!!!!

John & Estela on April 23rd, 2008 at 6:33 am #

Awesome news…. what a day, I was exhausted just reading it. Enjoy the blessings. Love ya.

Fran on April 23rd, 2008 at 8:09 am #

My thoughts exactly! I needed a nap after reading about your day!
By the way..was that a froggie I saw on the Bun’s shirt? Frogs are the best!
Happy to hear that all went well today.
Love and prayers-Fran

Chambers Family on April 23rd, 2008 at 9:56 am #

WOW! Super MOM! What a day…. I am glad to hear that everything went well and your completely wore Ella out. I hope you went and took a Hot bath or something. I know there is NO time for yourself being a Mom. Sometimes I still don’t get a shower every day.

I hope Ella slept the night!

Tammy on April 23rd, 2008 at 8:25 pm #

Hello everyone.
I haven’t looked at the blog for a week or so, and what a great treat. I love the pearled bow! Think those cheeks have grown a bit too!
How excited you must be to have things going so well. The lord is so faithful and his love truly amazing. You are so blessed.
Take Care

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