Posted (Tina) in All Posts on January-17-2008

It was exciting to see Ella looking so happy today.
First, Josh and I received training in infant CPR. It is scary to think that we might ever have to put that knowledge into action, but the good news is that we know what to do if it ever happens.
When we went to visit Ella, she was so happy. Josh had not seen Ella in a few days, since he was feeling a bit under the weather and did not want to expose Ella to any germs. But even with the silly mask on, Ella knew it was her Daddy! The huge smiles were a great sign that not only did she recognize Daddy, but she was happy to see him.
Smiles were a sign of the day. I have not seen Ella smile this much in a couple of weeks. Even then, it was a brief moment in time. This was a bunch of smiles throughout the day. That brought joy to my heart. I think we are so used to seeing our baby girl in a critically ill state, that you forget how much fun it can be to have a baby that is feeling half-way decent.
Ella is still battling her cold with the cough and congestion. The nurse practitioner led me to believe that it might hold on for another week or so. At this point, that seems to be the main thing holding back Ella from feeling amazing.
Her numbers today along with her smiley behavior told the whole story. Her oxygen was maintained at 500ml pretty much the entire day. Her heart rate was between 155-165 when she was awake and 125-135 when she was sleeping. Her saturations stayed in the 90s while she was awake and as the day went on, stayed at 100 especially when she was in a deep snooze.
I know that numbers might not sound that exciting, but they are a key component to assessing Ella’s state. We just want the numbers continue to stay strong and go in the right direction.
Ella’s main nurse practitioner that has her case right now (who has been working the mystery with us) is not going to be around until next Wednesday. We really don’t want to see any deviations in her great steps forward.
Today, they decided to increase her intake of breast milk to 100%. Although it will not last long, at least it makes it all my hard work seem worth it. Plus, it means that the higher fat content in the breast milk is not causing any fluid issues for Ella. This is a HUGE accomplishment. We have wanted her to switch to breast milk and then formula, so she can get the added nutrients that she needs.
Ella was due for her synegist shot today (a vaccine that she has to get 1x every 28 days during winter). It helps fight off sickness. Unfortunately, it will make her legs sore (where they gave the shot in each leg), but it is not supposed to cause any other ill side effects like the other vaccines she received in December. We hope this is the case – – she is making such good progress forward and we don’t want anything to make her take steps back.
They are still giving Ella low molecular heparin treatment to prevent clotting since the removal of the central venous line that was pulled from her partially occluded IVC. An abdominal scan is scheduled for Tuesday morning to assess the area and see if there are any other clotting issues. If everything looks normal, they will discontinue the heparin therapy. This would be great because it requires subcutaneous shots daily. Ella’s poor little legs have prick marks all over them!
We are 72+ hours since Ella’s last lasix via IV. And early this morning, her IV from her foot went bad and was removed. This means that she has no IV access. The better news: this means that she can have regular baths again. We’re excited to participate in her next one. She loves bath time!
Please continue to pray that Ella can tolerate her latest mix of treatments and that it will be the right combination to make her strong enough to go home. If she can maintain a steady path and get stronger, we might be looking at a discharge date before the end of the month.
We thank you for all the prayer support and for continuing to keep all three of us close to your heart.