Saturday, September 27, 2014

An unexpected procedure

Little Dorrit had an unexpected procedure done today. Well, it was unexpected for us. The lines in her umbilical area were no longer good to get the labs needed for her care and the doctors thought they found a blood clot in a vein in her head. So, to give Little Dorrit the medications she needs and be able to take labs, the doctors surgically inserted a venous line near the top of one of her thighs in her groin area. As soon as the line was put in, they began administering a blood thinner as well as the protein C supplement she needs. The surgery today was successful but everything right now is still very risky. Because Little Dorrit's condition is so rare, the doctors are unsure of how much of each - protein C and blood thinners - to give her as too much or too little of one or the other could cause bleeding or clotting.

This was another exhausting day for both of us. At one point, we had to go into a consultation room with a neurologist and the neonatologist so they could tell us about the procedure and why it had to be done today. Sitting down with the neurologist is always nerve wracking for me because what good news is a neurologist really going to deliver to me? In the past, we have always gotten bad news from the brain doctors. It is very scary not knowing if Little Dorrit will make it through these medical issues and what side effects may occur because of this treatment and her condition. Mr. Rochester and I are trying to stay positive and have faith and I will admit, at times we are lacking in both. I keep hoping for a miracle and try to take comfort in words spoken by Elder Jeffrey R. Holland in his recent general conference talk "Like a Broken Vessel:" 

"Believe in miracles. I have seen so many of them come when every other indication would say that hope was lost. Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead...Let us remember that through any illness or difficult challenge, there is still much in life to be hopeful about and grateful for. We are infinitely more than our limitations or our afflictions!"

Although we find it difficult at times, we are trying to have hope, believe in miracles, and count our blessings. Please keep Little Dorrit in your prayers tonight that she will sleep well through the night with no complications from her recent surgery. Despite having a diagnosis now, the doctors are still learning how to treat her condition especially the dosage she needs of protein C and anticoagulants. 

These flowers are outside the Ronald McDonald House we are staying in and their bright colors help lift my spirits whenever we walk past them.


Cormorant said...

Thank you for your words. I wish I could reach through the distance and hug you tightly! Heavenly Father knows and loves you and your sweet LD. His path and His purposes are sure, even when we cannot see beyond right now. Love and love and love and prayers your way. Xoxo

Joeby said...

You both are examples of the faith we all should strive to have. We love you all very much and pray for peace for you.

Katie @SwimBikeQuilt said...

Love, prayers, and sweet dreams for your baby tonight.

Mary said...

You are amazing!! Thank you for your examples of faith and hope!! We are fasting and praying for your sweet baby girl and for you!! We love you!!

Jani said...

Oh Aria, I love you guys so much. what a beautiful testimony to share with us, those words are inspiring and touching. I know you can handle whatever comes your way.

Jordan said...

I wondered if they were able to use the umbilical cord for IV lines - our little guy was able to have that done when he was in NICU and it was such a relief - he still had a few IV's everywhere else, but not bad. I hope the surgery is successful and helps her get the meds she needs. Having a NICU baby and not being able to hold them and feeling so helpless for your baby like you can't fix it is a hard feeling to go sit thru every day. Keep taking little breaks, folding laundry, and reading books. I love Elder Hollands words. Sending prayers and hope for comfort for you and your family.