Love and Dread

I both love and dread Finley’s follow up appointments. I love being able to get some reassurance that all those organs are staying put where they are supposed to be, that the stitches are holding and her patch hasn’t sprung any leaks.  I love showing off my miracle baby. I love them gushing over her chubby belly, thighs and cheeks. But I dread the drive. I am always overcome with memories as I drive the same route that I took during Finley’s 49 days in the hospital and I always get a few butterflies on the way. I dread how Finley cries during the ultrasound and now there is nothing I can do to soothe her. Apparently the last hospital stay and the NPO time has made Finley equate the binky with starvation and it no longer quiets her down. And I dread the waiting for the results.  After the ultrasound tech finished her part of the exam, she goes to the senior doctor to make sure she got all the shots required. With a screaming, moving baby – this is not easy to acquire. For some reason yesterday this took an extra long time to get them to return to the room. In that 30 minutes I started to worry that this time lapse meant something more sinister. His face and attitude was very somber and he got to the task at hand with a seriousness and gravity that made my heart still. It seemed like he was focusing on the diaphragm area and kept taking the same views. I started to get more nervous. I prayed urgently to God that this this wasn’t another reherniation. My heart began to beat even faster and my stomach was just doing flip flops. I finally voiced my concern and asked, “are there signs of reherniation?” The doctor replied “I can’t say yet – I am still trying to determine that. It is hard to see clearly.” Not the reassurance I was hoping for.  The next 15 minutes seemed to take an eternity and when he finally said, “I see no signs of reherniation” I burst into tears of relief. Once again, I let the fear creep its way in and allowed it to play in the playground of my mind.  We are not friends. You are not welcome here fear.

We made our way up to the Surgeons office for our appointment and Dr J kept saying that she really is a perfectly normal healthy baby. How amazing are those words? They are going to continue to watch for reherniation – but what he is really concerned about is her bile duct. You may remember where we last left off – an almost surgery in October ( that was cancelled because the blockage went away and Dr Bliss said that there probably had never been a cyst, just a blockage or slow moving bile, and that her bile duct is just a little larger than normal. Dr J thinks that the cyst is still there.  The plan is to do another ultrasound in 3 months and then a MRI when she is 12-18 months (unless she becomes symptomatic before) to get a better view of the area. She is still too small to be able to really get a good picture of what is going on in there. He thinks she will eventually need surgery to remove the cyst and repair the area.  I am thankful for his watchfulness and caution. But also think he is wrong. I really hope he is wrong. The last thing I want is for Finley to have to endure another surgery.

There are so many positives – that she didn’t need the surgery at 2 1/2 months, that we have skilled doctors following her closely, our proximity to excellent medical care- that she is in God’s hands always.  For this rare condition, most people don’t know they have these cysts until much later in life and if untreated for long period of time, these cysts can create cancer in the bile duct due to the long term inflammation. We are so fortunate to already be watching this area.

So we wait (again).  God really wants to teach me patience and trust. We wait and we pray. For the bile duct to shrink back to normal size and that there is no choledochal cyst hiding in there.  This, I will not fear. Remember fear, you aren’t welcome.  I really think he is wrong.  God – let him see your power.

6 thoughts on “Love and Dread”

  1. I am always so moved by your posts, Liz. A praise that things are still clear and no reherniation. I think we always say Finley is such a trooper, but it’s so clear…she must get it from her mama! Hugs.

  2. YAY so happy the appointment went well. Yes we Mama’s will always consume our thoughts with worry. (That is a good thing to me.) Normal what is normal but we love when the docs say that word!

  3. Thanks Liz for sharing…..had no idea you had all of this going on today…..thank GOD again as he has been so faithful. Him working wonders in your life and you posting about you not being “fearful” really is a testimony for all of us. None of us are perfect at not worrying/fear (I am one of the worst), but know that God will take care of those whom are faithful and trusting. I will pray for you guys all to not have this underlying worry each day. Much Luv Les

  4. So glad Finley is doing so well. I am familiar with that shadow of fear that you struggle with, but in a different context. There is such peace when I can recognize fear and Satan’s lies for what they are and trust God.

    Ezra (my youngest, now 3 years old) was hospitalized with RSV for 6 days when he was 5 months old. Up to that point, he used a pacifier but after that episode, he completely refused it. I think all the medical intervention, tubes in his mouth and face, and struggles to breathe just took away any of the comfort that the paci gave him. So he used me as his paci until he discovered his thumb about 5 months later. 🙂

  5. we are waiting too for our little girl to have symptoms, she had an u/s and mri before she was 5 weeks, she is nearly 3 months and nothing yet so we hope to get her to 12 plus month age bigger the better for the type of surgery she is going to need, I hope finley anabelle skips over this part and continues on her merry growing way, she and her family have gone thru enough, grow well little one tanja

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