I can tell how many people are praying right now, not only for Clara, but for me and our family. By all logical reason I should be feeling exhausted, frustrated, depressed, angry, sad, anxious and more. But instead, the past few days have truly been filled with love, joy and peace. Lots of peace. I know the only way that is possible is through the Holy Spirit. God has calmed and protected me during this difficult time and allowed me to experience such love and joy for Clara, has filled me with patience for doctors and procedures and treatments and tests, and has allowed me to have a deep sense of peace during a tumultuous time. I am so thankful for His Spirit watching over me.
We have had the calm and low-key weekend that we prayed for (KNOCK ON WOOD!). Clara has stayed stable throughout the weekend, with a few adjustments here and there, but no major setbacks. One of the respiratory therapists told us that being on ECMO is like a dance. You tweak one thing just a little and it sends something else out of whack, so you have to adjust that just a little and then another thing gets out of balance, so you have to address that. It's a constant "two steps forward, one step back" kind of move. As long as the end result is progress in the right direction, we're trying to take each little setback along the way in stride.
Friday's echocardiogram showed the first improvement in heart function and pulmonary hypertension. That chest x-ray also showed increased aeration of the lungs and a reduction in the haze and fluid build up there. Saturday we had to back off diuresis because the pump kept cutting off. This morning, they resumed the Lasix, but Clara's urine output did not pick up. In fact, it was much much lower than it has ever been. The doctors aren't totally sure of the reason for this. Today's echocardiogram showed that her heart was very full, so she doesn't appear to be "overdry." However, her systemic blood pressure was also much lower than it has been (although still within the acceptable range), so one theory is that her kidneys may be getting "tricked" into thinking that she's dehydrated when she's really not. Today's echocardiogram also showed more improvement with both her heart and pulmonary pressures. The official report said, "Right ventricular function appears improved from last study (4/8/11)... Normal right and left systolic function." This is the first time we've seen the word "normal" in quite some time! So, the cardiologists have recommended that we begin weaning Clara off of two drugs she's on right now: Milrinone and Flolan. Both of these were to address her pulmonary pressures, so if the doctor is comfortable weaning off of these, we are assuming that means they are happy with her progress towards addressing pulmonary pressures. Hopefully tapering off on these drugs will also bump her systemic blood pressure back up again some, get those kidneys unconfused, and allow us to continue diuresis. Today's chest x-ray showed that the big gas bubble in her belly from Friday and Saturday is much much smaller and we resumed breast milk feeds again (those were stopped yesterday due to the stomach bubble). There did not appear to be much change in the lung aeration from yesterday. Other than those changes, Clara's stats stayed fairly stable throughout the day and she was peaceful (thanks to an increase of sedatives). Her tidal volumes (how big a breath she's breathing in and out) are also slowly increasing, so we pray that will continue, allowing oxygen and nitric oxide to get into her lungs and continue to help open things up.
There's the medical update. Here are some photos from the past two days.
Here's Clara with her two adoring grandfathers:
|This little girl has this big man wrapped so tightly around her little finger already...|
Sunday we switched to green with sparkles:
Today Dr. Pranikoff pulled off her surgical glue and tape to reveal a beautifully healing incision. I'm not even sure it's going to leave much of a scar when it's all said and done!
|We had to put a mitten on her right hand because she was getting too close to her ECMO catheters and we don't want her messing with those!|
|Love these little piggies.|
|Robert reading Beatrix Potter to Clara.|
|And this is love.|
|Robert loves to smell that sweet little baby head|
We remember where we were a week ago today – it was the beginning of four really hard days of steps backwards. We are so deeply grateful that a week later we seem to be moving in the opposite, positive direction. We are more acutely aware of what a gift each day, each hour, each moment is and we are thankful for every second spent with our precious daughter. We ask that you continue to pray for her, continue to plead with God for the miracle that has begun. Specifically, pray that she will tolerate the weaning of those two PPHN drugs, that she will begin peeing again, and that diuresis will allow her lungs to open up and fill with air. Pray that her heart will continue to improve and be protected from the damage of high pulmonary pressures without any permanent damage. Pray that she will continue to show progress on her chest x-rays, echocardiograms and tidal volumes so that we can begin to think about weaning off of the ECMO machine. Continue to pray for the medical staff who serves us. Most of all, continue to praise God for the wondrous work He has begun in Clara and continue to ask that He might bring it to completion. We are thanking God daily for you – we are humbled and amazed to be surrounded by such passionate prayer warriors. Thank you for your love for us and our precious baby girl.