Relief, Elation, and Gratitude. Miracles do happen.

I did not lose any sleep leading up to Finley’s appointment.  I did not lie in bed worrying. I had peace. That, my friends… is prayer. Thank you.

Finley went in for her MRCP and X-Ray on the 2nd and did great. I knew before we left the hospital that her X-Ray looked great and no evidence of reherniation. (Cheers of happiness).  We were told we’d get a call on Monday to discuss the MRCP. Monday passed. I called Tuesday afternoon – I was trying to exercise patience. I was told Wednesday afternoon.  I called this morning.  Getting a pattern? It was frustrating, but I tried to remember there are much sicker kids that are pulling them in many different directions.The nurse relayed that the doctor didn’t think it was a cyst, but she would call and talk with me later. I was happy, but still had questions. We finally spoke late in the afternoon and wow. I am still spinning. She actually discussed the case in their Wednesday meeting and the whole panel of doctors was ‘unimpressed’ with the size of her bile duct. I am going to side track for a minute. Unimpressed? What funny terms doctors use. Personally, I am pretty impressed by all things Finley. But anyway, I digress. She said that even after conferring with the radiologist again, Finley’s bile duct is at the upper limit for a child her age. Did you catch that? Upper limit. That’s the upper limit for normal. She is still within a normal range, just at the upper end.  She went on to state that choledochal cysts are usually MUCH larger than what they are seeing with Finley’s bile duct. So I asked the questions that have been on my mind.. 1. Could her bile duct have been stretched by the bile obstruction in Oct of 2010.

She said yes. That is actually exactly what she thinks is the reason for Finley’s larger than usual bile duct and that it will actually all work out and become normal as she grows.

I asked if the bile blockage/obstruction.. sludgey bile was caused by the TPN and she said yes. So, as long as Finley doesn’t go on TPN again, that should not happen again.

If you went back to October 2010, you’d know that this pretty much is in line with what Dr Bliss thought. He didn’t think it was a CC afterall. It was Dr K, when he took over our case that took us by surprising saying he thought she still had a cyst after I subscribed to the miraculous healing theory. Though I didn’t agree with him.. he made me nervous with this idea looming out there. I think had I been on board, he would have operated on her and as the doctor said today, she is pretty sure if she operated, she would be taking out a perfectly healthy bile duct. This just reinforces to me that mamas need to trust their instincts. If you have 2 differing doctors opinions, make sure you get more opinions and trust yours too!

I cried many tears of sheer relief this afternoon. Just knowing that this doctor believed what I have been hoping, praying for – just is the best feeling in the world. Elated doesn’t even describe it accurately.  I am so happy that lightening didn’t strike my baby twice.  I know in my soul that Finley doesn’t have a Choledochal Cyst. Either she was healed, or it was never one to begin with. I know this is true.

So we don’t have to go back for a year.. She said we could go back in 6 months for my piece of mind, to which I said, I don’t need it. Finley will be happier with one year. Why subject her to tests just to ease my mind? If she was behaving weird, that’s one thing – but, just for me? No.  She said down the road we’ll even push to 2 years and once it is in fully in normal range, they won’t need to monitor it.

Thank you for praying for Finley. Words don’t even convey the true extent of our gratitude. Your prayers  mean so much. Thank you for loving our family.  Thank you God for answered prayers.


3.1.11 (For lack of a good blog title today)

Finley is now in the 50th percentile for head, height and weight. A well proportioned girl!  Last weigh in (last week) she was 16 lb, 8 oz. She is loving solids and just gobbles them up. She tries to grab the spoon and feed herself already and is very interested in what we are eating and tries to grab that too. So far she has had oatmeal, squash, sweet potatoes, carrots, and pears.  And speaking of carrots – that brings me to a little side note. On Sunday, Finley started to vomit – 4 times within an hour which prompted us to take to the ER, since I don’t want to wait and see with things like this.  Vitals were looking good and they did an X-Ray which was also very clear and did not show any signs of reherniation. X-ray can miss a reherniation (if big things aren’t up yet) but since they weren’t any other strong symptoms they didn’t do the ultrasound.  She will get that at her next follow up with the Surgeon in April.

Since she didn’t have a fever or diarrhea they don’t think it was a bug – so not sure what it was.  Carrots are not very high on the allergen scale, but some people are allergic. This was her second exposure to carrots, and apparently most reactions occur on the second exposure. Or her body wasn’t ready to digest them. We will take a break from carrots and the Ped wants us to try again in a month or so and see if it happens again.  We have her a appointment with her Ped tomorrow for her belated 6 month apt, a vaccine and her Synagis.

My continued prayer with each breath I take is for her not to reherniate again – I think all CDH parents pray for this every day. Some days are easier than others to not obsess over it. Right now I think I need extra prayer to not worry about it.

I have put together a team for the March of Dimes, Walk for Babies on April 30th in Portland. If you are local, join our team – and/or if you are able, please donate. (Team name: Oregon Stroller Strides) I remember walking in this event last year, just weeks after receiving the diagnosis for Finley. It was very powerful seeing all the shirts in honor of children, and in memory of. This year I will walk in honor and celebration of Finley. (amen!)

Thank you for all of you that pray for us and love us. I am always so thankful for all of you.